#LeftOffTheList ~ The Disabled Community VS Able Bodied Society

**This topic is a heavy one and might be triggering for some. If this is something you struggle with please seek support there is a list of services that may be useful, including helplines here: https://kayleighcreativeworld.wordpress.com/asd-resources/ **

**I will leave links to all my sources at the bottom of this post. **

What is #LeftOffTheList?

The hashtag was created by the disabled community as we became increasingly aware that we would not be prioritised during the Covid-19 pandemic and specifically the Covid-19 vaccinations. We were told last summer by the Prime Minister and UK government that they would consider, and support disabled after neglecting us through most of the first lockdown. Since the statement was released, we have heard nothing of how they will support us. The majority of us have been struggling through the past 13 months more so than the average (able-bodied/neurotypical) person.

A large majority of disabled people have been shielding since the start whether, or not the government have sent them the letter of acknowledgment, which has felt very invalidating that not everyone in the community is included in this list. We all support and appreciate those on the list, of course they are deserving and in need of that protection. However, it is also true that we feel ignored and left behind.

When it comes to the vaccine priority list, naturally age descending is the best way to establish the order of most vaccinations. The older anyone is the more vulnerable they are to almost any illness, virus etc. After the elderly, people with respiratory issues were also prioritised as coronavirus affects breathing therefore it makes sense that they would need urgent protection. Group 6 is the one disabled people have been paying close attention to. Here is the current list on Gov.uk for Groups 4 and 6 (groups for clinically vulnerable people)

Group 4

1. You have one or more of the conditions listed below.
2. Your clinician or GP has added you to the Shielded Patient List because, based on their clinical judgement, they deem you to be at high risk of serious illness if you catch the virus.
3. You have been identified through the COVID-19 Population Risk Assessment as potentially being at high risk of serious illness if you catch the virus.

If you do not fall into any of these categories, and have not been contacted to inform you that you are on the Shielded Patient List, follow the guidance for the rest of the population.

If you think there are good clinical reasons why you should be added to the Shielded Patient List, discuss your concerns with your GP or hospital clinician. People with the following conditions are automatically deemed clinically extremely vulnerable and therefore included on the Shielded Patient List:

• solid organ transplant recipients
• people with specific cancers:
  • people with cancer who are undergoing active chemotherapy
  • people with lung cancer who are undergoing radical radiotherapy
  • people with cancers of the blood or bone marrow such as leukaemia, lymphoma or myeloma who are at any stage of treatment
  • people having immunotherapy or other continuing antibody treatments for cancer
  • people having other targeted cancer treatments that can affect the immune system, such as protein kinase inhibitors or PARP inhibitors
  • people who have had bone marrow or stem cell transplants in the last 6 months or who are still taking immunosuppression drugs
• people with severe respiratory conditions including all cystic fibrosis, severe asthma and severe chronic obstructive pulmonary disease (COPD)
• people with rare diseases that significantly increase the risk of infections (such as severe combined immunodeficiency (SCID), homozygous sickle cell disease)
• people on immunosuppression therapies sufficient to significantly increase risk of infection
• problems with your spleen, for example splenectomy (having your spleen removed)
• adults with Down’s syndrome
• adults on dialysis or with chronic kidney disease (stage 5)
• women who are pregnant with significant heart disease, congenital or acquired
• other people who have also been classed as clinically extremely vulnerable, based on clinical judgement and an assessment of their needs. GPs and hospital clinicians have been provided with guidance to support these decisions

Group 6

• a blood cancer (such as leukaemia, lymphoma or myeloma)
• diabetes
• dementia
• a heart problem
• a chest complaint or breathing difficulties, including bronchitis, emphysema or severe asthma
• a kidney disease
• a liver disease
• lowered immunity due to disease or treatment (such as HIV infection, steroid medication, chemotherapy or radiotherapy)
• rheumatoid arthritis, lupus or psoriasis (who may require long term immunosuppressive treatments)
• have had an organ transplant
• had a stroke or a transient ischaemic attack (TIA)
• a neurological or muscle wasting condition
• a severe or profound learning disability
• a problem with your spleen, example sickle cell disease, or you have had your spleen removed
• are seriously overweight (BMI of 40 and above)
• are severely mentally ill

Further detailed information on priority groups is available in the COVID-19 Green Book, chapter 14a.

At the same time as adults under 65 years with long term conditions, the vaccine will also be offered to unpaid adult carers – those who are in receipt of a carer’s allowance, or those who are the main carer of an elderly or disabled person whose welfare may be at risk if the carer falls ill. 

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The list isn’t very specific when it comes to mental disorders and definitely has missed a lot of proven vulnerable conditions that would definitely affect the mortality rate against the average person of the same age. Many officials have claimed that there is no scientific evidence that any of us disabled folk are any more vulnerable, but the numbers prove otherwise. People with disabilities have made up more than 60% of Covid deaths not to mention the unauthorised DNR’s issued on disabled people last year. It is unacceptable that we are less valued when it comes to our care if we were to fall ill with coronavirus. I am also of the point of view that anyone prioritised for a yearly Flu-jab should be notable as vulnerable to this too. I remember at the beginning of 2020 coronavirus was being related to the flu in the way that it affects and infects people only in a more severe manner. I am not a medical professional and am not in a place to say how exactly the virus works within the body, but I can say that anyone at risk should include those who are prioritised for a free yearly flu-jab. There is enough information to suggest that coronavirus is even more dangerous to those individuals. It baffles me that some people can walk around without the fear of getting ill in the way that we do and that they can feel that they don’t need vaccinations. It feels unfair and we should be angry that our voices aren’t heard or appreciated by the majority of society.

In summary a lot of us have been left off the list and we are hurt and disappointed by this Once again the government has failed us, they are valuing us far less than the rest of the country. It seems to bring back the old saying that “disabled people are not useful or productive to our society”. Or that we are lazy and just want to be stuck indoors all day, every day. I cannot tell you how much I roll my eyes every time I hear this.

My Conditions

I’m just going to list them here; I will cover the relevant parts later in this piece:

• Autism
• ADHD
• Depression
• Anxiety
• Insomnia
• C-PTSD
• Chronic Fatigue Syndrome
• Hypermobile Elhers Danlos Syndrome
• Dissociative Disorder

The Discussion

Inews.co.uk included an article with quotes from people such as Dan Scorer head of policy at MenCap (Mencap is the leading voice of learning disability). “Everything we do is about valuing and supporting people with a learning disability, and their families and carers. Our vision is a world where people with a learning disability are valued equally, listened to and included.”

The first quote I came across is as follows: “People with a learning disability in England are dying over six times the rate of the general population – yet shockingly not everyone with a learning disability is being prioritised for the vaccine”.

I have seen many posts stating this statistic and as far as I’m aware MenCap is a legitimate, supportive charity created to help those with learning disabilities, including but not limited to Autism and Down’s Syndrome. Not all people with these conditions have diagnosed learning disabilities, however most do have comorbidities that fall under this category. Fortunately, people with Down’s Syndrome are on the priority list and I hope they have all been called for their vaccines by the time of writing this (April 2021). I have a diagnosis of Autism and ADHD but there is no way to measure “severity”, there is no mild or moderate forms of these disabilities. It’s a spectrum and affects us in different ways on different days. Most of us reject functioning labels which is the equivalent of this. What is stated in these guidelines is extremely ableist and discriminatory.  

“Other charities representing people with tetraplegia, high level paraplegia, chronic fatigue, and other rarer conditions have also asked the government to clarify its plan”. – George Martin (Inews.co.uk Writer)

We are yet to know anything other than that we have been deemed “not clinically vulnerable” by the government despite the figures suggesting otherwise.

“I’m afraid disabled people like me won’t be seen as ‘valuable’ enough to save from COVID-19” – Samantha Renke

There were multiple articles on metro.co.uk from Samantha Renke, a disabled, actor, and rights campaigner with personal titles such as

• “I had to chase my vaccine – how many more ‘vulnerable’ people have been left off the list?”
• “The Pandemic has worsened the online bullying of disabled people”
• “I wish caring for disabled people was seen as a long-term commitment, not a stop gap”
• “I don’t want to be your inspiration porn”

Samantha has first-hand experience with the discrimination and throw away ableist comments that damage our community, not to mention our quality of life. She has said “Until we as a society put people before productivity, I won’t ever feel safe”. We are made to feel we are not valued, as though we are not “productive” members of society. We are treated as lesser than all over the world. Samantha says “I felt disposable” which is the case for many of us. Whether it be our workplace situation as the pandemic hit or just generally being allowed to live as human beings. Most of the disabled community were shut away for over a year and not being vaccinated is going to cause even more stress and anxiety on these people while they have to watch their friends return to a “normal life” that still poses a huge threat to our health.

“The message many disabled people are getting is that we aren’t ‘important enough’ to save”.

In some places due to the overcrowding of hospitals DNR’s were placed on people with learning disabilities and Autism without any consultation with them or their families. Doctors in areas were told they could use discretion to prioritise who would get a ventilator, clearly allowing them to choose who is more ‘valuable’ or more likely – in their eyes- to survive the virus based on being previously able bodied. How is that fair? How can anyone determine who lives or dies based on any human condition? Yes, it is challenging and yes decisions have to be made quickly but this should never mean discriminatory behaviour is ever allowed! It was the governments responsibility to protect us and give us guidance on what to do and they failed our community on a catastrophic scale by allowing this to happen and still not trying to support any of us other than to “shield” from the rest of the world for an indefinite amount of time. The responsibility has been put on us to protect ourselves but not the rest of the public that have been breaking rules and spreading the virus throughout. Having the vaccine does not mean you cannot spread the virus, nor does it make you 100% immune. What it does do is reduce the risk of being hospitalised and will hopefully create a level of herd immunity once we have ALL been vaccinated. Based on the knowledge that the majority of our community is terrified to go outside, it is quite clear that we are not the ones spreading this deadly virus to our friends and families, therefore, we should have been prioritised for the vaccine along with the elderly. Unsurprisingly we have been in the same boat all year and should be classed at a similar vulnerability level. We all know that there will be a lot of people, as restrictions ease, being reckless and acting as though the pandemic never happened. I think disabled people should have the right to be protected against the virus because of this, especially as before long we may once again be forgotten.

I wanted for the world to stop treating us as an afterthought but even through the struggles they suffered through the past year, which in some minimal ways mirrored ours, they still diminished our struggles. They were “being dramatic” as they put it to us over the years. The difference is there suffering was temporary. Of course, we all felt sympathy, because being stuck indoors, being afraid, scrambling to keep our mental health from crumbling. However, that doesn’t stop us from feeling angry after years of trying to get the able-bodied to understand what we were going through and to stop invalidating our experiences to then be told “how can you do this every day?” and “I could never cope with this life, I can’t wait to get back to normal”. We know full well once they do, they will forget about us again. It was such a small menial experience by comparison to the rest of their lives. They will probably look back and laugh about how ridiculous it was for them. I am devastated by that thought. It genuinely keeps me awake at night. Do the able-bodied worry about things like this? I’d guess not or they would be more accommodating to us.

Accountability and Accommodations

I have said it before and I will say it again, for one year all the things we have been begging for to make the world more accessible were made available within a few months. Not for us, not so disabled people can be included in the rest of society, but for the able-bodied to work from home, so they could stay safe without feeling isolated or like they couldn’t do what society deemed “normal” or “productive”. I have a feeling all of these will become harder to have access to once the world opens up again. We have always had the right to ask for these things, and now we know they are easy to implement we have every right to demand them. Why should we be silenced? Why should we be forced to suffer when society (and the government) would never allow anyone else to go through this?

The video calls, the ability to work from home, compassionate paid time off because of unforeseen circumstances, being allowed to work at our own pace with whatever method helps us focus (e.g. listening to music through headphones, regular short breaks). These are not luxuries and disabled people will never see them as such, it should be the same as the right to have ramps in every workplace for accessibility.

The entire time people were working from home they were not constantly monitored, they could listen to music, they could take a 5–10-minute break when their focus was slipping away. They could wear what they found comfortable; they could work from the locations in their homes that worked best for them.

Isn’t it heart breaking how easy it was to implement? I was certainly floored when I witnessed this happen.

ME/CFS and Vulnerability

ME Association message from Matt Hancock, MP, Secretary of State for Health and Social Care that was sent to a person with ME/CFS: “In all cases you should contact your GP if you feel you should be vaccinated sooner. I want to assure you that we are committed to vaccinating according to need, and you will not be left out of forgotten in this process.”

Can you see the problematic nature of this message? That they put it down to how we “feel” we are vulnerable, as opposed to the facts and that we would be vaccinated “according to need” which is clearly not true as less vulnerable people are already vaccinated. He claimed we would “not be left out or forgotten” which is blatantly not true. We have been telling our GP’s, MP’s, anyone that would listen and had the power to help us that we were vulnerable and only some of us were listened to.

The are many first-person accounts in a guardian article of the anxiety surrounding their ME/CFS and coronavirus. I will quote a few here:

“I have Chronic Fatigue Syndrome and catching coronavirus would exacerbate it greatly perhaps even permanently. Previous infections of this nature have knocked me off my feet for a few months at best, caused permanent damage at worst. Although guidance allows for other conditions to be included in priority Group 6, ME/CFS is not mentioned on the list. I fear many won’t have the energy or ability to fight and/or a GP willing to advocate for them.” – Marie

This one struck a chord with me. I certainly have been running out of energy trying to fight for a vaccine, even with my partners help. I have been told by my GP to contact the vaccine and the helpline (NHS Vaccine Helpline No. 119) tells me to speak to my GP neither will tell me why I don’t qualify for it or who else to go to. I just get told “our hands are tied” with no reason. As an Autistic woman, I have been agonizing over the fact that I don’t have that answer, which is adding to my fatigue. It also made me think of how if I did catch the virus, I might not have the energy or ability to fight it off. I have found it to be a very physical fight to get better no matter what illness I get.  

“I’m unable to work due to Autism (and a learning disability). I have been shielding since September only going out for medical appointments, exercise etc. I do not go into shops anymore as there is a chance, I shall be challenged for not wearing a mask. I am exempt from doing so and wear a sunflower lanyard (to state my disabilities). However, there is always someone who won’t accept it and challenges me unfairly. It is so unfair when people should be mindful that not all disabilities are visible. The vaccine would give me peace of mind and protection. My GP does not recognise that I am in a high-risk group, even though it is acknowledged that my husband is my carer. The vaccine priority list people like myself at an unfair disadvantage.” – Frances- Mary

This really reflects how I have been feeling. I have just had to leave my job because of my conditions and to care for my health and I have barely left the house at all for the past year. I am too afraid to. Even when I went out recently just to visit a book shop, the streets were crowded with people not following any guidelines nor caring that there may be some at risk people trying to claim back an hour of their life from solitary confinement.

As for the challenging about the masks. I get severe sensory overload from wearing masks and even visors because I already have to wear high prescription glasses. It gives me a headache and causes panic attacks which means I have to take them off to take deep breaths comfortably as to not exacerbate the attack. The short time I did work toward the end of the first lockdown I wore my sunflower lanyard to work, and my management were aware of my disabilities so I assume they would understand, plus I would be working behind a screen to protect the customers anyway. I have absolutely no problem being asked if I am exempt, if done in a considerate manner however. My line manager had an argument with me over it because he didn’t “want” to wear one despite being able to. I was told I had to check with the overall manager “to make sure it’s okay” despite the law saying so. I was absolutely disgusted, my colleagues all backed me and told him I was disabled because it was clear he was being unreasonable but for the whole time I was there the complaints about having to wear a mask when I didn’t, seemed endless. It definitely triggered my anxiety to be told, and I quote “if customers ask and make a fuss about it, it’s your responsibility to explain it to them” as if it is any of their business. Customers don’t need an explanation other than “I’m exempt” before they move on and yet to have management basically say they won’t step in if I am being asked personal questions that I shouldn’t have to answer clearly shows it was not a disability friendly place. (I should note it took them far longer than any other place to have the measures enforced e.g., screens, public hand sanitizer, clear markings and signs, restricted number of customers at one time. All the red flags were flying high).

I am sure I’m not the only one that feels like I’m missing out when we see all the people going to pubs and wondering through shops whenever they like. I’m sure many friend groups are spending more time together. But I feel unsafe to leave my house. I am the only one in my family to not be vaccinated yet, my carer is the same age as me and he is already approaching his second dose. I spent most of my childhood locked inside because I couldn’t bring germs into the house (at least that’s what I was told) and to be put through that again has devastated my mental health.

The Fight

“We welcome the news that all adults on the learning disability register will be offered a jab more quickly in England, but we will not stop fighting for those with mild or moderate learning disabilities to be included as well as those with chronic conditions such as asthma and ME” Freya Papworth of Women’s Equality Party.

It is safe to say that almost all charities support us, no matter what our disability. In my opinion the government’s failure to acknowledge and protect us is unforgivable. We have been overlooked for too long! I have heard many stories of people contacting their local MP’s and any government official they can find. Very few have even received a response, myself included. At this point I am out of energy; I probably won’t see a first does until the summer. I know I will not get to enjoy the world the same way as everyone else until next year. My mental health is going to suffer the most, watching the crowds from my window, laughing groups of friends, excited children. It is devastating that I will have to reduce my contact with busy places as much as possible. As if the world wasn’t inaccessible enough to most of us.

I really appreciate all the work these organisations have put in to advocate for us, although it has furthered the evidence that the government care far more about their economy and the people who contribute by working in shops etc than those of us that are considered an inconvenience for asking for any accommodations.

I want the government to answer for what they have done and actively include us in conversations. We don’t see many disabled people in parliament, and we are definitely the furthest thing from the minds. According to Gov.UK in 2014 (which is too long ago to not have update this) there were over 11 million registered disabled people in the UK (out of 65 million at that time). I am certain as the conditions are better understood and diagnostic criteria has been reviewed over the past 7 years there are many more. For example, Autistic girls (and likely non-binary and trans people) were under diagnosed, the criteria was only suited to stereotypical “boys”, now we are seeing many girls getting their diagnosis and becoming more confident in themselves.  If we take up more than 16% of the population (and that is just those with an official diagnosis) surely our voices matter. It might seem like a small percentage to some, but the population of London was over 8 million in 2014 and nearly 2 million of those were likely disabled. 2 million is a huge number for just one city. Fordwich in Kent is one of the smallest towns in Britain, estimated at just over 300 people which means more than 50 of those were likely disabled. You couldn’t go to your local shop without seeing someone disabled. All this information is readily available online and yet we are still treated like a minority. Imagine being an ethnic minority as well as LGBTQ+, I truly feel for those people. They must be hit hardest of them all in these huge government issues.

2 million people in just one place and yet we still are not being heard. 2 million people made to feel that they don’t matter. 2 million people valued as lesser than everywhere they go. The government is blindly encouraging ableism, they silence us and tell everyone to go back to normal. Did anyone receive any reason to stop shielding? They just said it could happen not that we were safe. If anything, it would have been safer to go outside while the rest of the country was in lockdown and that is saying something.

My heart and trust have been broken by the past year. We lost over 127,000 people, approximately 76,000 were disabled. Every single life lost matters! I doubt I will ever trust our government unless they seriously revaluate their priorities and neglect for us. When I have the energy, I will keep shouting for our rights. I will make noise and I will not stop until we are truly heard. We deserve better, we deserve to have as good of a life as anyone else. We Are Different, Not Less! The fight is not over yet…

~ Kayleigh

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Sources:

NHS Vaccine Information:

https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/book-coronavirus-vaccination/

Government Information:

https://www.gov.uk/government/publications/covid-19-vaccination-care-home-and-healthcare-settings-posters/covid-19-vaccination-first-phase-priority-groups

https://www.gov.uk/government/statistics/disability-facts-and-figures/disability-facts-and-figures

Inews.co.uk Source:

https://inews.co.uk/news/uk/vulnerable-fear-left-off-at-risk-list-millions-eligible-jab-871000

Metro Sources:

I had to chase my vaccine – how many more ‘vulnerable’ people have been left off the list?

I’m afraid disabled people like me won’t be seen as ‘valuable’ enough to save from Covid-19

I’m worried that those of us shielding will be left behind

People with mild learning disabilities ‘left to die’ at back of vaccine queue

ME Association Website Source:

LATEST: COVID-19, ME/CFS and the JCVI Priority Vaccination List

The Guardian Sources:

https://www.theguardian.com/society/2021/feb/12/we-feel-forgotten-high-risk-groups-missed-off-uks-vaccine-priority-list

https://www.theguardian.com/society/2021/feb/12/charities-urge-clarity-over-who-qualifies-for-next-uk-vaccine-wave

Disability News Service Source:

Government questioned over ‘unforgivable’ failures on vaccine priority

Women’s Equality Party Source:

https://www.womensequality.org.uk/left_off_the_list

Disability Rights UK Source:

https://www.disabilityrightsuk.org/news/2021/february/disabled-people-still-being-overlooked-roadmap-planning

Misc Autism and EDS Sources :

https://www.autism.org.uk/advice-and-guidance/topics/coronavirus/health/information-about-upcoming-coronavirus-vaccines

https://www.mencap.org.uk/

https://www.mencap.org.uk/about-us

EDS & HSD and COVID-19

GOV.UK Source:

https://www.gov.uk/government/statistics/disability-facts-and-figures/disability-facts-and-figures

Other Sources:

https://www.independent.co.uk/news/uk/politics/boris-johnson-coronavirus-disability-impact-uk-commons-b469297.html

The Depression Demon (Part One)

I have been away from this blog for a while. A lot of changes have been happening in my life. As an Autistic woman change does not sit well with me. That coupled with the winter and the national lockdown, my mental health was bound to suffer. I wanted to talk about it, maybe to educate and hopefully to validate anyone who is going through a similar experience.

I was diagnosed with depression at 15, it was a dark time. I couldn’t get out of bed. I found no joy in anything. I couldn’t think of anything I wanted to do to make myself feel better, I just slept a lot. I have never slept well but I also couldn’t keep myself awake. My fatigue always hits harder when depression rears its ugly head. It made me think I was lazy, unworthy, useless. I couldn’t do simple daily tasks and I beat myself up about it every day. That niggling feeling that you should be productive, and you should be doing all these things, even though you don’t have a clue what those things are. It’s a constant battle of needing the dopamine hit and knowing that you have achieved something when your brain won’t accept that surviving is enough.  

Recovery isn’t a linear line, and for some it is simply remission. I know, personally, I will always have depression and I am okay with that. I have had huge fluctuations through the past few years. I even convinced myself in the last two years that I would never have to feel the way I did at 15. I was very wrong. I truly believed that my self-care habits and lifestyle were keeping me in a manageable state, which is true, however I ignored the possibility that certain events can trigger me. I am sure many others feel the same. When you have better days, you enjoy it and appreciate it, you’ll do whatever it takes to keep that going.

I am back in a similar place; I know I am safer, and I know I am loved. Which is a big difference this time around. I do feel as though I have lost my sense of self again and am struggling to find a way back to my goals, when I remember what they are. It is a challenge to be kind to myself for not being able to do as much as I think I should be. It is very easy to feel like I’m wasting the day. It shouldn’t be wasteful to need to rest and heal. After the year we have all had, it is necessary. Mental health is important and needs constant care. I will admit that over the Christmas period I pushed myself too hard without taking the proper precautions. I partly feel it was somewhat worth it for what I achieved as it will benefit me for years to come. However, I would have liked to slow down but I hyper-focused on the task and couldn’t stop until it was done. I have a habit of doing this, thinking rest can wait until the work is done. This is what society conditions us to think, work before play, dinner before dessert. Why can’t we do what feels right? What brings us joy? And why do we have to feel guilty for doing these things? For prioritising happiness and rest over work and “productivity”! It’s all nonsense, you can always be “more productive” there is no such thing as “full productivity” or the “most productive”, it’s all relative. There is no real way to measure it! There is no reason to feel bad for doing less than someone else, just as there’s no reason to feel bad for having lighter coloured eyes.

I have always thought of depression as a demon. It’s silent, deadly, cruel. It feeds off of low self-esteem and negative thinking. I am not sure how I am going to get out of this other than allowing myself to do what feels right until I do. With my chronic pain and fatigue, sometimes that means just napping and watching tv for a while. I know there are better days ahead!

If there is anyone else going through something similar, you will be okay. I hear you, feel free to comment or message me through the contact page for a chat. Try some of these helplines if you need support:

Samaritans: Confidential support for people experiencing feelings of distress or despair.

Phone: 116 123 (free 24-hour helpline)

Website: www.samaritans.org.uk

Kooth: Chat to their helpful team about anything that’s on your mind. Message them or have a live chat.

Website: https://www.kooth.com/

Childline: When you call them on 0800 1111 you’ll get through to a counsellor, they’re there to listen and support you with anything you’d like to talk about. Or you can have a 1-2-1 counsellor chat online.

You can also send them an email from your locker. They’ll try to answer this within a day, but sometimes it can take a little longer.

Website: https://www.childline.org.uk/get-support/contacting-childline/

CALM: CALM is the Campaign Against Living Miserably. A charity providing a mental health helpline and webchat.

Phone: 0800 58 58 58 (daily, 5pm to midnight)

Website: www.thecalmzone.net

Mind: Promotes the views and needs of people with mental health problems.

Phone: 0300 123 3393 (Monday to Friday, 9am to 6pm)

Website: www.mind.org.uk

You are not alone, you are strong, you will get through this!

~ Kayleigh

Meltdowns Are Not Just for Kids

I have spent a long time coming to terms with my meltdowns. I have been experiencing them all of my life, but I just thought it was normal. Kids throw tantrums sometimes, I thought I was no different, that it was the same thing. However, most kids grow out of them. The tantrums become mood swings and even those become less frequent with age. It wasn’t until after my diagnosis at 18 that I learned the difference between a tantrum and a meltdown.

In case you didn’t know, a meltdown is involuntary, it happens when a person on the spectrum gets overwhelmed and can’t express how they feel. It is not attention seeking! It is not a choice! It is not something to be punished! Meltdowns can involve, stimming, crying, screaming, swearing, anger, panic attacks, lashing out, anxiety, mutism, hysteria and more. This can last from a couple of minutes to hours! It is very draining to go through especially when they happen on a regular basis.

People assume that any meltdown is “acting out” or a “temper tantrum” but this is very damaging to Autistic people. Especially when, in those moments, the last thing they want is attention. Adults having meltdowns tend to be told to “act your age” or “don’t be so immature”. I have been told by other people that they have been called every name under the sun. They have been called things like; “crazy”, “drama queen”, “psycho”,” unreliable” and “not good enough”. It certainly isn’t understood or taken seriously.

I think another misconception is that it stops when the worst is over. It doesn’t. Afterwards individuals need rest. Sometimes the feelings of overwhelm lasts for much longer. Sometimes it will manifest itself into several meltdowns across a couple of hours or even days. Other times it builds up over a period of time which means there is a lot of agitation and stress leading up to and following the overall meltdown.

Many people experience abuse because of their meltdowns. They are told over and over again that they are “making a fool” of themselves or generally taunting and tormenting them. It is awful. It makes things so much worse to be told you are “pathetic” or “acting like a baby” when it is completely out of your control. Call it what you want, bullying, abuse, “discipline”, it doesn’t matter, it is not okay no matter the label. Someone having a meltdown needs support and comfort not nasty names and degrading comments.

Most people tend to hide away or painfully suppress the meltdown until they feel safe and alone. Generally suppressing it makes the outcome far worse and possibly causing it to last longer. One person described it to me in an interesting way “It’s like carbonation, like a can being shaken. Constantly bubbling up until it’s opened when the pressure release causes it to explode!” I think that description is rather accurate and personally it perfectly describes how I feel when I mask during times of overwhelm. According to many people I have spoken to have said that they will usually have their meltdowns with their long-term partner or an alternative person that makes them feel safe and is aware of to do.

Another individual quite rightly commented that for some “it is something that has to happen every once in a while” meaning it is important to let it out and not allow emotions to bubble up until you burst. It is actually healthy to express emotions, for people on the spectrum, it might just seem a little different than most others. It can be hard to manage for the individual and for onlookers to see but this is part of the reason why Autism is disability as these meltdowns are in fact disabling.

An Autistic Mother sent me a message saying that she keeps being called in to her Autistic child’s school to be told that she was not parenting and disciplining her child properly, just because the child would have meltdowns at school and they didn’t know how to manage it. It is not the way a child is disciplined that will determine whether they have meltdowns or not, it has absolutely nothing to do with how they were brought up. I really felt for this Mother, it is so hard to find the right support for anyone on the spectrum and even harder when educators try to blame it all on the parents. Have any of you had an experience like this?

The National Autistic Society has a really useful post about meltdowns where they also describe meltdowns as “an intense response to overwhelming situations”. They explain how during a meltdown the individual loses behavioural control which has been described as overreacting by neurotypicals. It is not the individuals’ fault that they have a meltdown it is simply a reaction to something that they cannot process or express.  

There might be signs that a meltdown is on its way. There may be signs of distress, for example, anxiety levels rising, irritability, easily upset, needing to be in control, and overwhelmed more frequently. It is important to try and find what triggers meltdowns so that they can be managed or avoided where possible. If there is a certain event that happens right before a meltdown then it might be time to ask why? I am sure any Autistic person would like to reduce the number of meltdowns they need to have where possible.  Everyone has their own triggers, but they can change over time and some might not be all that obvious. I find that some of my meltdowns come out of nowhere and I still have no idea what caused them.

Some of the common triggers can include:

Sensory Challenges

Routine Changes

Anxiety

Communication Struggles

I definitely have difficulty with all of these on a daily basis.

If you want to know how to help someone who has meltdowns the best thing to do is, ask them what they would like and what they are comfortable with. Each individual will have different experiences therefore they will have different things that help them. If you are unsure of what to do it is best to be calm and gentle with them, it is hard to communicate during a meltdown please be patient with them. Give them a safe place that is quiet and will avoid overloading/overstimulating the individual. And most importantly, give them time. It can take a while to recover or even get through a meltdown, but it will take its own time and there isn’t anything anyone can do about that.

So, meltdowns are NOT just for kids. It can happen to anyone on the Autism Spectrum at any given time.  It is hard for everyone involved but will always be most taxing on the individual having the meltdown no matter what age they are!

Something to remember is that not everyone’s meltdowns are the same. Each person has their own individual experience. Never expect meltdowns to look the same! Some may only verbally express meltdowns, others may only physically express it, some may do both or have a different way entirely.

What do you wish people knew about meltdowns? Would you like to see more about this topic? Leave a comment below!

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May all your wishes come true…

Kayleigh

Why I Wouldn’t Change Having Autism

I wouldn’t change having Autism for the world. But I have recently been learning about all my Autistic traits and there are so many of them that growing up I wasn’t even aware of. I see the world so differently, people are equal, some sounds and textures are bliss, I find odd things comforting and enjoy all the little things in life. It is amazing in so many ways! I would never sacrifice that even if it meant getting rid of the bad stuff for good.

I have seen lots of things on the internet lately about people “finding a cure” or “reversing” autism which I find just as upsetting as all the people saying vaccines cause autism. Autism isn’t an illness. If you want to label it then it is classed as a disability. People who have autism don’t need a cure; they need support.

I know that these articles I have been seeing are aimed at the parents of autistic children and I appreciate that they can be hard to handle but it isn’t worth trying hopelessly to fix or change them. It is a part of who they are and there are plenty of resources and support networks to help you and them. These vulnerable parents shouldn’t be made to feel they need to change their child or that something is wrong with them. They need to know there is support for their children out there.

I also know that some people like to separate themselves from Autism (which is totally okay) however, the vast majority prefer to be called Autistic as it is a part of their identity and I feel the same. Without Autism I wouldn’t be me. It is how I think. How I feel. How I see the world. I wouldn’t want to change that. Some of the best thoughts are the most ludicrous. The best feelings can be so intense that I know I will never forget what created it. It is a part of my awkward personality. It means I can be professional at work and childish at home. I can have extreme highs and I wouldn’t change that just to get rid of the lows.

Of course, I have the large majority of days that I struggle, and I do wish I didn’t have to go through those parts. Comorbidities in my mind are somewhat separate to my Autism. Although, because my brain is physically different from neurotypicals, Autism might make me more susceptible to things like anxiety and depression, I don’t view them as part of each other very often. Just because I would like to get rid of my comorbidities, doesn’t mean I want to change my Autism.

Because of my Autism, I view the concept of hierarchy differently too. I always thought everyone should be treated equally and fairly regardless of age, race, gender, job title, disability etc. I always treat people with the same respect that I expect to receive, if someone has wronged me of course they will lose some of that respect, but they will be innocent until proven guilty. Good people are as good as each other no one is worth more or less than anyone else in my mind. I think if everyone thought that way there would be a lot less conflict in the world and far less arguments between social groups.

My unique perspective allows me to be more creative in my art and writing. I see things that neurotypicals might miss. As I am not very good at communicating verbally, I am much better and writing or making something to convey my emotions. I created this blog to advocate for the Autism community and share my personal experiences and although I don’t speak for everyone, I’m sure there are many people who have had similar experiences or feelings. I wanted to give a voice to those who haven’t found theirs yet and help them to not feel so alone.

I don’t want or need a cure or to “get better” I just need a little extra support and find everyday things more challenging than a neurotypical. I always want to be Autistic and I will continue to hope that the world will become more accommodating for people on the spectrum. I hope that Autism is better understood and that we aren’t defined by how much we outwardly show it anymore. I hope that more support is offered so that anyone who feels strongly about getting rid of their Autism starts to feel a little less like it’s a burden. Granted there are a number of negatives with Autism but there are positives too and this post outlines only a few of them.

May all your wishes come true…

Kayleigh

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What would you like to know about Autism? Leave a comment below.

Autism in a fast-paced world

Working in the 21^st century is fast and furious. Meeting customer demands, pleasing the boss. Doing everything to keep your head afloat on minimum wage. It’s a cruel world we live in. But it can be beautiful too. The strength people have that gets them through each and every working day, no matter how long or taxing. No matter what they are struggling with or what they are going home to.

People go to work with mental illnesses every day and they don’t get enough credit for it. It’s a challenge for neurotypicals to go to work most days. Imagine if something beyond your control was stopping you from walking out the front door. Stopping you from getting on that bus. Stopping you from earning a living. There are so many reasons why it’s difficult. For many, it’s Autism. I’m on the spectrum and work 30-hour weeks every week. People on the spectrum deal with customers good and bad. They deal with the lunchtime rush of retail. The high demand from managers. Sometimes we have to take on several roles in a day. There isn’t a single day the same as another.

Autism causes difficulties in the working world. I had to fight for regular hours. I get up at the same time every day. Leave the house at the same time. Get the same train. It took longer than it should and multiple l recommendations from health professionals to make it happen. To avoid being stretched to thin. After being diagnosed (at 18 years old) I felt empowered. It was like I could finally explain to people who I was and why I am different in some ways. I had to get copies of my diagnosis report and speak to the HR medical team to get the recommendation to both reduce and regulate my working hours. However, even with all this information and professionals backing my reasons, I still had to fight it with my manager. Unfortunately, he could still say no if it wasn’t convenient for the company. Working in a short staffed, busy environment, it is very difficult to get any kind of support.

My advice to anyone attempting to get support or leniency for their health, physical or mental, would be that you need to show how it would help them. They don’t usually want to listen to your needs as an employee. Managers are very much business focused, working their way up the ladder and only looking for a profit. Show them that reducing your hours will help you to focus better; you will be able to schedule appointments around work rather than inconveniencing them. More rest means less mistakes, fixed schedules means no more being late or struggling to concentrate with hours before home time. Show your employer the how it will benefit them.

Another point is to remember to know your rights. The Equality Act 2010 and the Disability Discrimination Act 1995. Know that you have certain rights and your disability needs to be considered in what action is taken. I was fortunate that my constant fighting and research paid off. It was still a compromise, but it was closer to what I wanted than I expected to get. I noticed a considerable difference after the change was put in place. I stopped making mistakes, it was slightly easier to leave the house in the morning, I felt more productive in the evening and on days off. It made a difference, however, there are still bad days, the problem was reduced not eradicated.

Something to remember in the workplace is that you can’t always see people’s difficulties. It is known that women with autism can mimic other people’s behaviours very well, you might work with someone for years and never know they have autism. Lots of people with autism struggle with the lights and sounds of their surroundings, couple that with loud and potentially angry customers it can be insufferable. It is common for customers to get angry when they have to wait more than a few minutes to be served, they will yell from the queue, harass you at your post, they will always make it the individuals’ fault. It can be very overwhelming. It gets difficult to concentrate, a neurotypical would be uncomfortable in that situation, for someone with autism this would feel like they were going to explode. To carry on all day takes extreme levels of energy and courage. The sense of being overwhelmed makes it almost impossible for some to communicate, powering through is the only way.

In retail you are constantly talking to people, communicating, serving. Having to listen to all sorts of comments sometimes directed at you personally. It is a brutal trade. By the end of the day the exhaustion sets in, that feeling of being mentally drained. It’s not always the kind of exhaustion that allows you to sleep it off either. Sleep is great for physical exhaustion, but the mind needs much much more. Self-care is so important for people on the spectrum, to recharge and refocus. People on the spectrum need time to do the things they enjoy and disconnect from their working life, which in my experience is very difficult to do. Not being allowed that time means more sick days, harder workdays and more mistakes.

Something to remember is you have rights to time off and you can also say no to additional hours. You only have to do what your contract states. If you are fortunate enough to have fixed hours your days off are personal time and regardless of what a manager might say, they have no right to know what you do or how you spend them. They should not make you feel guilty for having time off or reducing your hours to take care of yourself. Never feel as though you need to change that for them. Self-care can be the busiest thing you do all week, working on your wellbeing is important and should be both respected and appreciated. I find so many employees don’t feel they have the courage to stand up for themselves. They’ll do whatever it takes to keep their job, even if that means letting their managers walk all over them. You can say no! They should discuss changes with you and notify you of when they will happen. People on the spectrum find change challenging, it takes time to adjust and can throw their lives completely off balance. In a world where everything moves so fast, change is all around. Giving notice is so crucial when something is going to change. It gives people on the spectrum time to figure out how to adjust and what they will do to make it easier. Having less than a week to hear any changes to a work schedule is not enough time for someone with autism. They might begin to panic and will worry endlessly until the event occurs. Employers really need to be trained on how to handle the disabilities of their staff in order to make adjustments. There are so many companies that claim to have mental health support for employees, when really, they are not trained on handling these issues at all.

There is so much pressure to keep our jobs and the struggle to earn enough to live on is getting harder and harder. And yet it is expected that people with disabilities do the same amount and the same ability as an able-bodied person. It must be noticed that people are being stretched too thin. More job opportunities need to be made available, many retail outlets are struggling for staff and yet “can’t afford” to hire more, causing their existing staff to suffer. They claim “head office believe we are able to operate with the staff provided” despite only receiving bare minimum. It’s inhumane. There is minimal financial support too. Trying to find financial help requires so much paperwork, so many tick box tests. You really do have to fit the precise picture of what a person with a disability looks like. So, we are forced to work more than we are able and suffer the consequences.

People with autism are known to struggle with keeping a job but those who do manage face adversity daily. Discrimination and bullying does happen in adult life. Even if the bully is dealt with correctly, you might live in fear of them repeating their actions or just generally feel uncomfortable around them. It is hard for people to understand that a lot of disabilities are invisible. I think we face enough bumps in the road when it comes to revealing our disabilities to employers. When looking for a job, employers will either turn their noses up at someone with a disability or only show interest to make it seem like they have a diverse team of people under them which is more negative than anything else. People with any kind of disability have to fight their way up the ladder with little or no success. It isn’t fair! If feminism makes women equal to men can’t there be something that make those with disabilities of equal value to those without! Let’s applaud those who get out of bed and brave the world. Work is a hard monster to face. Don’t be too quick to judge someone. They might be fighting something you can’t see. Choose kindness. Encourage others to learn about A.S.D then maybe the world will be a little more inclusive.

Useful Resources:

NHS About ASD: https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/autistic-spectrum-disorder-asd

NHS Adults with ASD:https://www.nhsinform.scot/illnesses-and-conditions/brain-nerves-and-spinal-cord/autistic-spectrum-disorder-asd#adults-living-with-autism

May all your wishes come true…

Kayleigh

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A Kind of Spark ~ Book Review

Title: A Kind of Spark

Author: Elle McNicoll

Summary:

Addie is a passionate young girl who has a special interest in sharks and is now moving that interest on to the witch trials in Juniper. She has such a deep connection to the horrendous events of these “witches” and she knows that must be remembered as people not just outcasts like her. That it is never too late to make it right. The town however does not want to be remembered for the pain they caused and the people they hurt, that won’t get in Addie’s way, she will do whatever it takes to make this happen!

Review:

I loved this book. Yes, it is aimed at children, but it is the first time I have read a good, genuine representation of Autism! This isn’t even disclaimed until you start reading the book, nothing on the blurb or cover so I am sure many people will pick this up having no idea and finally learn something about it. Elle McNicoll is Autistic herself and says she wrote this during an incredibly angry time in her life, she is brutally honest and that is why I love her so much. (Some of the best work comes from the strongest emotions, anger, sadness, love, joy!)

I fell in love with Addie in the first chapter, my heart broke for her knowing the pain being bullied can cause. I was rooting for her and her new friend Audrey to raise awareness and money for the memorial.

The bond Addie had with her sister Keedie was beautiful and their ability to speak to each other in a way that no one else could understand. Keedie guides Addie through her struggles with Autism as Keedie has already gone through it. Keedie’s twin Nina isn’t like them, she doesn’t really understand them and honestly I didn’t like her all that much at the start but when an incident at Addie’s school means both sisters are called in (as Addie’s parents were both working) I began to see her in a different light.

It was an amazingly easy to read (regardless that it is a children’s book) and quite emotional for me as I have never felt so well represented. I read it in about an hour spread over a few days! I also think it is a really good length for this type of book somewhere around 200 pages with a comfortably sized font.

10 out of 5 stars if you ask me, unique, exciting, and many doors opened for disability representation in books (that isn’t just for comedy or to humanise someone else)! I want more books like this, and I really hope that Autistic kids can pick this up and finally see the representation that they deserve! I think the author and Addie are incredibly inspiring, so I know I will read this time and time again.

Twitter: Rocketship Bookshop

I also wanted to say that the Rocketship Bookshop is a little indie shop that I think is amazing. I ordered my copy from them and it arrived within a couple of days and was packaged so beautifully, wrapped in blue paper, with a pink bow and a little carboard shark tucked into it. Highly recommend if you want to support a smaller business!

“That’s what my Autism is. It’s like a kind of spark.”

May all your reading wishes come true…

Kayleigh

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Work in Progress Wednesday ~ August Edition

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Totoro

As you may have seen LoveCrafts kindly gifted me some yarn, so I have ben working on making Lucy Collins’ Totoro patterns! I am loving it so far and I think I am almost done, it just needs arms, the signature leaf, extremely exciting! I am using Hayfields Bonus DK yarn which is only £1.85 per ball and the pattern (linked here) is completely free! Will you be trying this pattern? What patterns have you been loving lately?

*View All of Love Crafts Free Patterns: https://www.lovecrafts.com/en-gb/l/crochet/crochet-patterns/free-crochet-patterns*

Crochet Granny Squares

I have been using making granny squares as a form of self-care, it is mindless and easy to do! I find it really relaxing especially if I can watch my favourite shows at the same time. I am using King Cole Luxury Merino yarn, which is super soft, might not be the best yarn for this project but it feels and looks lovely. You have to be careful not to snag the individual threads while crocheting as it can happen surprisingly often (somewhat like the DMC Natura yarn that I used for my Scalloped Edge Top). It’s probably going to take me ages to finish but I am enjoying it so much that I don’t mind one bit. I am also sewing in the ends of each square as I finish it to save me the pain of doing them all later as there is going to be around 100 of them (wish me luck with that!) I also hope all the colours look good together in the end, I am fairly confident they will, but you never know.

A Kind of Spark

I have started (and almost finished) A Kind of Spark by Elle McNicoll (published by an incredibly diverse company “KnightsOf“) and it is one of the best books I have ever read! It has an Autistic female protagonist! Yes, you heard that right! A genuine portrayal of girls on the spectrum and I am so thrilled by this! I have never read a book that accurately represents Autism like this, and I want it to be in every school and library everywhere! The best part is that from the cover and blurb, you would have no idea that Autism was even a part of it so anyone could be drawn to this and finally learn about Autism and how it might present in females, plus all the little girls who have Autism can finally have a story that they can fully relate to. We are being seen and heard now! I can’t wait to see what’s next for females on the spectrum! The future is looking brighter!

There will most certainly be an incredibly positive review of this once I have finished, it’s the greatest!

(Also check out The Rocketship Bookshop, they are sold out of A Kind of Spark at the moment but have loads of other amazing titles and package them up beautifully!)

Colouring

I may have indulged in buying a new colouring book (I just can’t help myself) so here are a few of the pictures I have filled recently!

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I love Relax with Art magazines/books they are reasonably priced, and they regularly release new ones! Each picture is beautiful and detailed, the seasonal themes make them all the more fun. If I ever need a break, I like to just sit down and colour for a while, I take my time and allow it to calm my mind. What colouring books do you recommend, I love adding to my collection!

Feel the Beat (Short Film Review)

I wanted to talk about Feel the Beat on Netflix as it impressed me with the direction it took! I really thought I would hate it at first, Sofia Carson did a great job of making an easy to hate character. I expected a cringey, easy-viewing, Disney style film (and in some ways it was). What I actually saw was inclusivity! Different races, body types and disabilities almost casually portrayed on screen. I loved it, they had most of the kids knowing ASL (American Sign Language) as one of the characters is deaf which I thought was a step in the right direction. I would love for sign language to be used casually in all movies so that it is normalized, it is a step in the right direction in my opinion! (I also enjoyed like seeing the problems with glasses and dancing, relatable and funny!)

Have you seen it? What do you think? Highly recommend watching it no matter how old you are, watch the trailer here (although it doesn’t do it justice): https://www.youtube.com/watch?v=PhLSDnxLp-M

Frozen 2 (Short Film Review)

This was an experience. Not really a good one. We waited 6 years to see this, and it was not worth the wait. The music was poor in quality, very lacklustre, none of the songs were as good or catchy as the first. I think it was made too modern by comparison. The story wasn’t great and felt a bit forced, there was a weird Rock and Roll type number in the middle that didn’t make a lot of sense to me. I just really didn’t like it. I enjoyed the first movie and was very excited for the concept of the second one, and yet from the moment I saw the teaser trailer I knew it wouldn’t be my cup of tea. I felt it was a 2/5 stars. Maybe it’s my age or maybe I am just to attached to the first one, it just didn’t captivate me, I could not feel enjoyment while watching this. I don’t feel it is worth doing a separate post for this, so I will leave it there.

Watch the trailer here: https://www.youtube.com/watch?v=bwzLiQZDw2I

Hamilton (Musical Short Review)

Now this was incredible! I love Lin Manuel Miranda and I loved the unique idea for this show! My partner went to see this in the West End and has been talking about it for over a year and I was so excited that Disney+ was going to release it with the original cast. I didn’t know much about Alexander Hamilton or Aaron Burr and how the US Constitution came about but this musical put a really fun spin on history! It is full of raps and songs written by Lin Manuel Miranda, which meant Broadway and West End could reach a whole new audience that maybe wouldn’t have considered it before!

The set was fantastic! The revolving floor creating the time freeze scenes and the moving staircase, the prop hands that made moving props a part of the routine, it was all carefully planned and creatively thought about! I especially liked the scene where a bullet was fired in slow motion and one of the stagehands acted as the bullet, it sounds odd, but it was beautifully done! I felt it all so deeply and the little details really made the whole production. There were a lot of motifs in the songs that carried throughout, each character had their own and you can hear them each time they show up in a song which is genius and unique! So many amazing details!

I loved the casting too; racial barriers were broken and there were so many different types of people enlisted to bring this story to life. I don’t like the term “colour-blind casting” but it simply means that the cast members weren’t necessarily the same race as the person they are portraying and for me it is the kind of diversity I wish the world had back then. They didn’t make a trope out of it, it felt so comfortable and refreshing rather than the all-white casts that feel a bit strange and overly normalized when it shouldn’t be. I want more shows like Hamilton, I want diverse castings and unique storytelling. I loved Renee Goldsberry, her voice, like her character was Angelic(a) she deserved the awards she won, I want to see her in more of these modern shows! I also felt Leslie Odom Jr really brought Burr to life, he has an amazing voice and stage presence. I could have believed he really was the character he portrayed. It was great to see finally that people of colour get to be rich, intelligent, powerful characters rather than the awful stereotypes we have grown up seeing. It is a step in the right direction for this community, I am glad they are being given the space to create things so beautifully.

I would give this 5/5 stars, but it certainly deserves many more! I highly recommend it and I know that 3 hours seems like a long time to sit and watch but it doesn’t really feel that long. I think it is the perfect length to give everyone their chance to shine!

Disney+ Trailer: https://www.youtube.com/watch?v=DSCKfXpAGHc

Orders Possible

A while ago I mentioned that I would be able to take orders for prints of my photos once lockdown has ended and now the shops are open again, I am able to do this at last. So, if you like my portfolio of photos and would like a print with or without a frame, send me an email via my contact page or a DM via Twitter or Instagram! Tell me the number from the photos you would like, and I will give you a quote for the size, frame, and postage before you buy! I’m not looking to make a huge profit from this, so they won’t be super overpriced, and I promise not to judge if you change your mind after hearing the price. I want to give you the best service possible, so just send a message and we can talk about it!

View the photos here: https://kayleighcreativeworld.wordpress.com/portfolio/

Wilde Like Me

I finished reading Wilde Like Me by Louise Pentland at last and it was so worth it. I really loved it so it is be a positive review that I am working on, set to go up here towards the end of the year so click subscribe to be notified when that is live!

That’s all for this month’s WIPW, what else would you like to see here? Leave a comment below!

May all your wishes come true…

Kayleigh

Autism ~ The Assessment Process

It has been almost a year since I received the result of my Autism assessment and I think it is time that I give an insight as to how it works and the things I had to do during it. Despite the fact I got my formal diagnosis after my 18^th birthday I was lucky enough to have started the process at 17 therefore they had to push it through a little quicker to make sure I was given the result before the time came to move on to adult services. (This is also an account of UK services; I do not have any experience with how this works anywhere else in the world. If you have experienced this process elsewhere, leave a comment below, I would love to know how it works where you are!)

How did this process start?

I won’t go into details about my childhood just yet as it is quite a sensitive topic and although Autism has been present my whole life, I personally wasn’t aware until my first appointment with CAMHS (Child and Adolescent Mental Health Services).

This all started with my comorbid mental illnesses involving but not limited to, depression, anxiety, panic disorder and possible sleep disorder. I was going to my GP regularly with incredibly low mood, bad anxiety, and suicidal thoughts. It got to the point when they realised that I wasn’t improving but possibly getting worse by each visit. (I went through the typical responses every young person gets such as “we’ll give it two weeks and see how you feel” which happened on several visits or “try exercising more and have a bedtime routine to help you sleep better” as if I hadn’t already tried.) After an awful experience with antidepressants and several attempts at counselling over a couple of years, they finally referred me to CAMHS which took about a month to go through and multiple doctors visits to push it forward because I was desperate by this time. I finally got my letter through to say I had an appointment in 4 weeks so I booked time off from my new job because the appointment would be 1-2 hours long and I didn’t want to go straight to work after or come from the early in the morning shift.

I remember it was a Tuesday in December and I went to the local CAMHS building having no idea of what they could offer me. It was a long conversation with the woman I met with where she asked me a lot of questions about how I was feeling and some of the things I was going through, I’m a bit hazy on those details now as this was 2018 and everything after that was rather stressful for me. I do remember one question quite vividly that she asked me if I had to have my food separated on my plate and can’t have foods touching each other. Now I answered this as sometimes depending on what I was eating, I thought nothing of it. It was just another odd question in my opinion. However, the next thing she said to me was, “I think you might have Autism; how would you feel about an assessment?”. I was shocked and confused because I didn’t think it was at all possible that I was Autistic but decided to go along with it anyway. When I left the room my mother then told me that they had thought I might be autistic when I was younger, and I was supposed to be assessed then. I won’t go into those details but needless to say that assessment never happened, and I never knew it was even considered before.

What happened next?

This process from start to finish was about 11 months long. The next steps were in the form of many questionnaires. Anyone who has dealt with CAMHS or already has a diagnosis knows what I’m talking about. Chances are even if you have a mental illness diagnosis you will have done some of these as well. One of the questionnaires was about my childhood and how I behaved/felt, another was about me at present. There were also a few questionnaires for my parents to fill out about me, and another which would typically be for a teacher or someone not directly related to you. Which is quite difficult when you are home-schooled and weren’t surrounded b anyone growing up who know enough to answer otherwise obvious questions, so my parents said they would get my non-blood related aunt to do it. I know it the UK it is very difficult to find a work around when it comes to people who know you as a lot of the process involves how you were as a child which means parts of your life and behaviours that you may not remember. There are ways of getting a diagnosis it just might be a little harder.

After filling out all these questionnaire’s I believe I had another appointment where we brought the forms for the same woman as the original meeting, I don’t remember much from this appointment as some traumatic events happened around the same time and my memories are quite hazy which is a normal trauma response, I’m sure I will talk about trauma and flashbacks another time later down the line. My parents also had to go to an appointment without me to discuss how I was a s a child directly with the same Psychologist. (I will point out it took a lot of phone calls, which are not my strong suit, and had to chase up a lot of things and making sure the appointments were made. Be persistent and always call to check on the progress of your assessment as it took a long time to get the letter for the main assessment). I have vague memory of perhaps 4 or 5 appointments over the course of the year including the one my parents went to. All the other ones are a blank space in my memory so let’s just skip to the most important one.

Assessment day

This was a very anxiety provoking day. It was a month before my 18^th birthday. I got there almost an hour early because I was living with my boyfriend at this time and had to rely on a train to get me there on time. I went in with my stress ball and my headphones and waited until my appointment time came around. This time it was a different Psychologist although I had met her at an appointment before and had been speaking to her over the phone throughout the second half of the process. To put it simply I knew I could trust her and that she would be patient with me. It was a couple hours long but they did put an estimated time on the appointment letter. She had another lovely lady sit in the assessment to take notes as well although she didn’t speak much during the assessment. It was basically a series of activities they observed me doing and tried to have conversations with me to see how I express emotions and communicate with others. There were other activities too, telling stories, demonstrating actions like brushing my teeth, a picture book with no words that I had to read. It was rather uncomfortable, it didn’t make much sense and I wasn’t sure what they were testing for but they could tell I had Autism through all of that. I didn’t know yet though, I was agonising over it. I had done my research and connected deeply with the label of Autism and had the fear that I would be proved wrong. I knew I was waiting for a call that might change everything. A call that would tell me the answer to a question I’ve been asking for years. It was hard so I had to keep busy, I booked a week off work for my birthday. I went out with my partner exploring and eating out, doing the things we enjoy. While we were on the beach in Brighton, I got the call, the woman from the assessment. She told me she didn’t want to tell me over the phone so she gave me an appointment for a few days after my 18^th birthday. I seemed like good  news but it didn’t mean I wasn’t full of anxiety.

The news

The appointment was actually with the other woman that was taking notes in the appointment. It took less than a month to get the final news. I went back to the CAMHS building and sat back in one of the rooms with the other woman and she had a large document with her and some resource packs. She read out some of the document to me in sections and explained what it meant and we had a little chat about it. She outlined the things I showed were difficult for me as well as the positives too. She told me I have what would have been called Asperger’s Syndrome but it is now just Autism Spectrum Disorder. She explained the good side of having Autism, it was a lovely conversation and she was very patient with me. She even asked if I wanted her to tell my parents over the phone or to keep confidentiality so I can tell them as much or as little as I want. She told me she’d add in a few notes for work and the adjustments they can make for me. Although I couldn’t take the diagnosis paperwork with me that day she told me she’d post the whole thing and a duplicate to my home later in the week. At least it meant I finally had an answer, although I seemed to have a million more questions. But I had that answer! I went home to my partner and cried with relief, everything I had been relentlessly fighting for, all the phone calls to push it forward. It was all for something! And I am so proud of myself for getting through it. It took almost a year to get there but it helps me understand who I had been the whole time, I just never knew it. I didn’t have to feel so strange or like it was my fault that I didn’t fit in at school.

Knowing this information means I can adapt my life and environment to suit my needs. I can understand the things I struggle with a bit better and know what to say to anyone trying to help me. I also like knowing I can now give my younger self empathy and compassion rather hatred and anger for her actions and feelings. I do wish I knew when I was younger so that I could have been taught better and had support systems in place but I’m glad I sought out the answers myself and I will whole heartedly know it was my doing and my hard work to get to where I am now. I have pride in my disability. I have pride in the woman I have become. I know I did the right thing.

So if you’re a parent wondering if it is worth getting your child diagnosed, it definitely is. And if you’re an adult wondering if you should go through the process, it is. It will give you answers you’re searching for, as well as potential access to some support and accommodations. In the UK you are protected under the Equality Act 2010, which means no one can discriminate against you for your difficulties. Whether that be in work or education. Read up on your rights, it’s important. It is worth it! It is hard but it is worth it!

Here are a few tips for you if you are thinking about getting you or your child assessed:

1. Be persistent, keep calling to check up on the progress of you assessment and make sure the next appointments are booked!

2. Don’t do it alone, make sure a friend or family member can support you. It can be quite overwhelming/draining so make sure someone can lend a helping hand wherever you need!

3. Do your research, google might not always be the best options but I think in this case it might be. Ask the #ActuallyAutistics on social media, look at the NAS website and their related links, try and understand Autism as best as you can even before the initial appointment or discussing with your GP. This will help you to understand and communicate you thoughts and concerns a little easier!

Hope this helped, leave a comment below with your questions or concerns, I’d love to answer them.

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May all your wishes come true…

Kayleigh

Cars 3 ~ Film Review

**CONTAINS SPOILERS**

I remember when the first Cars movie came out over a decade ago, it was the summer before my first year at school. I was coming up to 5 years old (I’m almost 20 now). This movie was one of my favourites growing up, I watched the DVD over and over. I had the toys and the lunchbox (I loved that lunchbox), I went to school with it every day, but this was a time where misogyny and sexism was accepted as a normalcy. Everyone made fun of me because Cars is for boys and only boys can enjoy it. This is why I wanted to talk about Cars 3, there wasn’t a female racer or many female characters at all in the first film. (There were some more in the second, but it felt a bit detached from the original. I still enjoyed it though.)

So, this film has aged with the viewers, it is set around 10-15 years after the original. Lightning McQueen is considered an old-timer, younger racers are joining the track and are surpassing Lightnings’ old-fashioned methods with new technology. Lightning’s team and the Rust-Eze brand are sold by Rusty and Dusty to Sterling who creates a high-tech training building to help Lightning beat the new racers. Lightning has a young female trainer named Cruz. Cruz is a very energetic, passionate, driven trainer, although that’s not what she always wanted to be. During their journey together preparing Lightning for the Piston Cup Lightning learns that Cruz wanted to be a racer when she was younger but was made to feel as though she didn’t belong and was bullied by the bigger male racers. (You can see why I like this film!) Cruz races with Lighting during his training and wins each race. Spoiler if you haven’t seen this film; Lighting starts his Piston Cup race but as he pulls into the pits, he makes the team change Cruz’s tires and paints his signature 95 on her side doors (do they have doors? I’m not so sure), Cruz finished the race in first place and proves all of the bullies wrong and earns her place as a racer!

I feel as though many young women feel the same about this film. I think any woman that enjoyed this franchise was bullied as a child or was told they couldn’t do things that the boys did. Cruz is around the same age as the rest of the fans and is also a fan of Lightning McQueen so we can all resonate with her a little bit. I said before the movie started that I had hoped for a female racer as there wasn’t in the original and I am so happy with how it all ended. It is great female empowerment for the new generation of Cars fans and a lovely nostalgic sense of justice for those of us put down for the things we enjoyed.

I would like to point out when I read a lot of the comments made about this movie, the women enjoyed it thoroughly and loved the Cruz character but 90% of the men commenting either hated the character, wished there was more of just Lightning McQueen, or they “don’t care about Cruz, her story or anything that has to do with her” and wished she wasn’t in it at all. The way she “had it hard as a kid” will strike a cord with many female viewers as we went through the same thing but I suppose the commenters I saw didn’t go through it so it isn’t important to them. I feel very passionately about it and am glad this is how they chose to end the movie trilogy!

I can’t put into words how happy I am with this one. I just don’t know how to explain the way it felt to watch something so new yet classic. 10 out of 10 for Pixar giving us what we wanted and didn’t know we needed. I might be a little late to see this one but if you haven’t yet, watch the trailer here or watch the full movie on Disney+!

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May all your viewing wishes come true…

Kayleigh

Work in Progress Wednesday ~ July Edition

It’s time to talk about the things I have been loving in the past month and the projects I am currently working on!

Animal Crossing

First on my list is Animal Crossing related, if you have been reading my life updates you will have seen that during the time I’ve had at home I have been playing it a lot on my Switch Lite, I find it helps a lot with unwinding and shutting out the real world for a bit. A friend of mine asked me about my crochet and we got to talking about Animal Crossing crochet patterns and we were searching the internet to find the best ones. I stumbled back across a favourite designer of mine, Sabrina Somers, she does make her patterns in US terminology however it is easy enough to find translations online. I am rather used to her pattern writing as I have made several of her Pocket Amigurumi characters from her book that you can buy from her website. I found that she had an Isabelle pattern for £3.49 (UK pricing) it is a digital download, but you can also get Chrissy, Pete and Poncho patterns all sold separately. I don’t buy many patterns as I normally buy magazines/books or create my own, but this was too exciting to pass up! I already had all the yarns and the right hook size to get started right away. It is broken down into easy sections and just looks fantastic, but I think I will write about this in a post of it’s own. I want to delve into the nitty gritty parts of the pattern as well as what I liked and disliked.

Games

I have been playing some more XBOX games lately, with my partner. Granted I had to buy an extra hard drive for it, but I guess that just gives me more of a reason to play my days away. I have been loving Trials Fusion, it is a sort of racing game. Involving motorbikes, BMX’s, quad bikes and even unicorns, you have to race over the obstacles in the trial’s tracks through increasing difficulty. I basically get addicted to these games and become completely unaware of the time. I want to get Trials of the Blood Dragon next which I have played before but not all the way through, very excited about it!

I have also gotten into Overcooked on XBOX One. I hated it at first, I found it stressful and hard to distinguish between the different ingredients. However, as it was my partners game, I was more inclined to play it with him even when I wasn’t sure. After playing through about half the game I started to really enjoy it! It’s definitely better working as a team to meet the orders at each restaurant. It’s very fast paced and a good way to channel my stress. There are a few expansion packs to buy as well, which means, despite flying through the levels, there are still more to be played!

Art

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Here is a link to my pinterest where I found all the reference photos: https://www.pinterest.co.uk/kb30607/sketchbook-references/

I have started working in a sketchbook recently, practicing drawing people and how I feel and simply getting things onto a page and into practice. I have used some photos from Pinterest as reference photos and have been experimenting with colour and paint. I am trying to practice on a regular basis to improve my skills.

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I also recently tried repainting an old watercolour eye that I first made quite a few years ago. I followed this YouTube tutorial: https://www.youtube.com/watch?v=oj3QHaIXuRM

I didn’t have the same, expensive, Windsor and Newton palette, so the first time I used a cheap palette of just a few colours on cheap watercolour paper, which is probably why it is very low in resolution. This time around I used Daler Rowney tubes which gave me almost infinite possibilities of colour and the opportunity to successfully mix the shades I needed. I also used a better watercolour paper that was about twice as much as the original, which made a huge difference. I am definitely improving, what do you think? I also sent a photo of it to Purple Ella on YouTube and she very kindly shared it in a livestream! (If you haven’t heard of her, she is a delightful Autistic and Chronic Illness YouTuber. Here is the link to her channel if you want to check her out: https://www.youtube.com/user/purplemumify)

I never used to like watercolour because I felt so out of control and was too impatient to let each layer dry before wanting to do the next. I think I will finally start using it more and practicing the layers with more patience and self-respect than before.

I have also started an illustrator study. I have this scrapbook that I have barely used so, half of it will be used for a fashion study/illustration idea I have, and the other half will be a study of different book illustrators. I want to come up with characters and the final cover art for a story I wrote a while back. It is a children’s story and I would like to publish it on Amazon or iTunes as an independent book. But first I need the illustrations to bring it to life.

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I will be using different tools and media for these. I would like to do the final pieces digitally, but I will need to invest in a tablet and Apple Pen as well at the software to do it with. Currently it does not seem possible. I have started working on a pencil drawing and watercolour painting for the first study of Cicely Mary Barker’s fairies (an illustrator I grew up loving). I adore her style and aesthetic that carries throughout her work. I will also be looking at Nick Sharratt and Quentin Blake’s work as well as many more.

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I am struggling with motivation for this project, though I am not sure why. I think I will work on it intermittently as I don’t feel as drawn to it as my other projects.

Reading

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Recently I have been reading a bit more, normally before bed for about half an hour every other evening. You can expect a few book reviews for the coming months. I finished Daring Greatly at the start of the year and Twisted Tales was the last book I read. I am now part way through Wilde Like Me by Louise Pentland and I’d like to think I will finish it and put a review up by the end of 2020. I am enjoying it so far as an easy read and very much a feel-good book. So, if you’re looking for an action packed, gripping storyline then this might not be for you. It is more of a cosy book. I am enjoying getting lost in stories when the world feels too much. I will write a review as soon as I’m finished reading!

I am very excited to start A Kind of Spark by Elle McNicoll which is up next on my TBR pile! It has an Autistic protagonist exploring the events of witch trials in history. I will let you know more when I start reading and will definitely be reviewing it!

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What are you reading at the moment?

Love Crafts

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Love Crafts have generously gifted me some yarn to make patterns from their free selection on their website. I have chosen to make Lucy Collins’ “Totoro” amigurumi patterns so that I can have a little family of them. I will also be making the “Paintbox Yarns: Camping Cutlery Canteen” that I will be repurposing for crochet hooks!

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You can find all of these free patterns here:

Love Crafts Free Patterns: https://www.lovecrafts.com/en-gb/search?q=free+patterns&craft=Crochet

You can download Lucy Collins’ free Totoro patterns here:

Grey Totoro Amigurumi: https://www.lovecrafts.com/en-gb/p/grey-totoro-amigurumi-crochet-pattern-by-lucy-collin

Blue Totoro Amigurumi: https://www.lovecrafts.com/en-gb/p/blue-totoro-amigurumi-crochet-pattern-by-lucy-collin

White and Small Blue Totoro Amigurumi: https://www.lovecrafts.com/en-gb/p/white-and-small-blue-totoro-amigurumi-crochet-pattern-by-lucy-collin

Tiny White Totoro Amigurumi: https://www.lovecrafts.com/en-gb/p/tiny-white-totoro-amigurumi-crochet-pattern-by-lucy-collin

This is the pattern I will be using to make my crochet hook case:

Paintbox Yarns – Camping Cutlery Canteen: https://www.lovecrafts.com/en-gb/p/camping-cutlery-canteen-in-paintbox-yarns-cotton-dk-downloadable-pdf

I will be writing blog posts about this and sharing each step of the way on my Instagram @kayleighscreativeworld and my stories! I am very excited about these projects and can’t wait to get started and share them with you! Here are a few pictures of what I have done so far:

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New Crochet Pattern

Buy the Pattern Here: https://www.lovecrafts.com/en-gb/p/santa-josy-crochet-pattern-by-kayleighs-creative-world

I have been working on a new pattern for Christmas this year! Hint: It will go nicely with my Santa Josy pattern! I have almost got it ready and it will be live on Love Crafts this November if all goes to plan! I haven’t made a new pattern in quite a while, but I am very much looking forward to this one, as usual it will be in both UK and US terms, full instructions and pictures. It will be £1.99 the same as my Santa Josy and I will be leaving links to all the yarns I used.

What would you like to see a pattern of next?

Random Things I Have Been Up To

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I recently made a few mini Triceratops and sold two to a friend! They are super adorable; you can get the pattern from Club Crochet! There is also a super helpful video tutorial on how to make it also, I will link it here!

mental-health-calendar-cw

I have used my mental health calendar for the past month and have been loving doing it! I am definitely in need of self-care right now and am sure I will do the calendar again throughout July. If you would like to see a new calendar, let me know in the comments what you would like to have included! Here are a few of my creations and accomplishments from the start of this calendar:

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I will be making a whole post about this and my experience with self-care soon.

And that’s all of my WIP’s and things I’ve been enjoying recently. What are you working on at the moment?

May all your wishes come true…

Kayleigh

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