My Autism Toolkit

 I'm Autistic, yes, blah, blah, blah, but in my years since coming to terms with said diagnosis, I've developed a range of ways to help me cope in certain situations. This post has been in various stages of drafts since early 2024, but as I have a lull in photos to post this month, I thought I'd work on it now. 

Starting out with what I call my 'Just in Case bag'. I've always carried (what other people may see as) an unnecessary amount of stuff with me whenever I leave the bubble of my house. My Just in Case bag is something I've had for as long as I can remember - even as a child, I liked to take my special bits and bobs along. Though of course, my priorities have changed since colouring books and Puppy in my Pockets were packed in my bag.
I'm aware that many people carry some necessities with them, and parents need a whole host of things to leave the house. It's not strange to be prepared; however, what I lug with me every time I step foot out of the door may seem to be verging on over the top. 

My 'Just in case bag' is actually split over multiple pouches within my main bag. I usually prefer a backpack because it feels more comfortable to have something against my back while in public, however I recently got my gorgeous custom Bat crossbody bag. In some ways I prefer this if I am going to be in a busy place in particular as I can keep it closer and feel safer from thiefs and such.

Within these pouches I have -

Other items I use to help me manage my autism:

- Headphones. 
Not to be a stereotype, but since buying a pair of Bluetooth headphones with a noise-cancelling option in July 2024, I now understand why ear defenders or headphones are used so much. These have been a massive help to me while at home to block out sounds, even when I'm unaware of what is causing me issues. 

- Earplugs.
I have tried three different types of earplugs now, and I will tell you for nothing that Loop are rubbish! I use Alpine Clear Tone, which are far superior to anything else I've tried. I feel many similar products try to appear trendy, and although influencers may tell you they are cool, I personally think they don't provide the right balance of noise blocking and hearing.

- Sunglasses. 
Sensitivity to light is another of my sense fails. No matter the season or weather, if it is bright I need sunglasses. 

- Blankets.
People online seem to swear by weighted blankets but these sound nothing but stressful to me. However, I do covet certain fleece blankets which I will use to provide comfort even to the detriment of me sometimes overheating.

- Play-Doh.
Now I understand that this one might sound like a joke but I'm deadly serious. I have a tub of play-doh in a drawer in the living room and I use it not only as a 'stressball' of sorts, but also as a scent re-centring thing to sniff. I have issues with my oldfactory system and can get smells than no one else can smell stuck which is overwhelming. When I'm really struggling a sniff of something like this can help. I am looking to implement a more travel friendly, less outwardly weird option for when I'm out and about but most things that exisit are essential oil centred which can be overly scented for my liking. 

- Finch app.
I've been a hater of apps for as long as they've been a thing - why does every store need their own app?! However, Finch has been an unbelievable help to me in everyday life. Finch is esentially a modern day Tamagotchi Bird who is fueled to go on adventures by me completing my list of tasks. The app sends me reminders to drink (see below), as well as take medications and basic daily tasks like washing my face and brushing my teeth all of which I can easily forget espcially if there are changes in routine for any reason. 

- Juice Bottles.
With my Autism I don't regognise many feelings such as hunger, thirst or even needing the toilet until it is an extreme. That means for a large portion of my life I've been perpetually dehydrated because I just don't register that I need a drink. To combat this Mr H makes up flasks for me every morning, left in prominant places so I drink more regularly. We use flasks/bottles specifically as my hand-eye coordination (or lack thereof) can lead to spills when drinking from glasses. 

- Soft Toys.
A stance I have held forever is that soft toys are ageless. They are for everyone and there is no shame in finding comfort from one. I have collected them and loved them from when I was a baby, to an undiagnosed child carrying around multiple and lining them up, kissing each one before bed, to now. My collection spans pal sized dragons and bats who I can hold in my hand in stressful situations, to full sized soft toys that I can properly hug and my childhood Simba who goes on every holiday will me. 

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Non-physical additions to this list could include the fact that routine is important to me so I make sure to stick to that as much as possible. I can't communicate well with strangers or over the phone, so Mr H helps me in those kind of situations. When leaving home or have appointments etc I research the area beforehand so I can familiarize myself with the area and where to park to at least minimize those anxities. I also am always very organized and have any information or paperwork we may need in a folder.  

While I do have all of the above systems to assist in a smoother way of daily life, they aren't a cure all or failsafe methods to deal with my Autism. I still struggle greatly with so many effects of Autism and this inexhaustive* list is just a sample of ways I try to reduce the risk of meltdowns, shutdowns and everything inbetween.  
As I continue to move through life, I am still learning my triggers, struggles and methods to live life. 
And of course this isn't the half of it because I also have physical disabilities which opens a whole other can of worms...

If you have any tips and tricks or specific systems you use I'd love to hear them!

*(because my memory is not great and I will certainly have missed something!)

I Hate Being Autistic

I hate being Autistic.

I didn't ask to be this way. I didn't do anything to become this way. I was born Autistic and my whole life I was made to believe I was just strange, weird, a freak, extremely picky, overly emotional, had anger issues, in general just different.
I don't want to be like this. So I can't quite comprehend why people pretend to be or want to be. You don't get drugs for it you know? It's not something you can treat or cure. You don't get any other help or support either. Well not as an adult, especially one without an intellectual disability too. 

You just get given your diagnosis - here, this is what you are. This is why you've never been able to relate to anyone. Why you've never fit in, or had many friends, why you were bullied, why jobs have been difficult for you, why you're anxious and depressed and why life is just harder for you. Goodbye. Good luck carrying on struggling through the rest of your life.
If I wasn't this way it's likely I would have achieved many more things I could/should have. And a lot of things wouldn't have happened that shouldn't have. 

It's impossible for neurotypicals to understand the difficulties we face because to describe them when half the time I can't even tell you what emotion I am feeling, is also impossible. If I can't describe how I'm feeling or what I'm struggling with, how are people meant to know? 

Why should people care that certain sounds physically hurt me? Or that the light is too bright. Or that they are too close to me and I need more personal space. Why should they care that I can't access certain places or services because I personally cannot put myself in those situations or even use the phone? 

The world is not made for disabled people on a whole, including Autistic people so when you're Autistic and also have mobility issues is it any wonder that we become recluses who never leave home and wallow in our own depression.

Autism has become a hot topic of discussion over the past few years with everything from tv programmes to social media 'influencers' sharing an insight into our world. This is great for education and such, however, I do also find that neurotypicals only see confident people able to effectively communicate their points with other people. They relate to some of the points and so underestimate the extent to which we struggle with them. 'Masking' is a term that many people are aware of but I feel they don't fully understand it.

For me, my days differ greatly from the majority of the general public and I don't go a minute without being affected by Autism. I struggle daily and constantly feel like I am swimming against the tide just trying to keep afloat. I deal with other health conditions that I cannot get help for and am not listened to by our healthcare system because I cannot communicate the way others do. Our society is ableist and inaccessible to a vast percentage of the disabled community and that needs to change.
Please realise Autism is a disability and we are living in a world where we don't feel welcome. 

I hate being Autistic.

I didn't ask to be this way.

I don't want to be like this, but I am.

My Autism Diagnosis Journey

I've wanted to talk more about Autism and my diagnosis but wasn't sure how or what to say. So I asked online for some questions about my diagnostic journey and below is what I received. I hope some of my ramble is helpful!

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How does it feel to have a diagnosis? 
Unlike most other diagnoses, Autism is something I was over the moon to be officially diagnosed with. That will sound strange to a lot of people but it was like a weight lifted off my shoulders. It's not a disease or an illness to be cured, but an answer as to why I am the way I am and every day more things click into place for me now. 
I've lived life with anxiety and depression since my teen years and had a hell of a time in high school, although my diagnosis doesn't take that away, it has kind of given me a little closure and helped to process the trauma of so many things I've been put through at the hands of horrible people. 

Does it make it easier?
It has made things both easier and more difficult but on the whole much easier. Due to knowing what is wrong with me, I can make accommodations for myself therefore reducing the likelihood of meltdowns, shutdowns and the like. That can be difficult though because it means I have to miss out on things I might think I want to do but know that they will cause sensory overload. 

What was the biggest struggle to getting that diagnosis?
So personally, I'd have to say that the actual diagnostic assessment was the biggest struggle for me. I was very lucky to have an incredible GP who was so helpful and not everyone can say that, so I'm thankful for that. Being on the waitlist for such a long time was frustrating at times, but understandable and definitely not a struggle. However, the in-person assessment was traumatic for me, just like any other doctor or hospital visit. The clinical specialist was the most wonderful lady and put me at ease as much as possible, Mr H was with me all the time and the questions were all fine, it was just the situation in general that stressed me out. Before that day it was always just attributed to bad social anxiety when I'd be ill with stress in circumstances like this but nope, just Autism!

Advice for someone who is not sure how to go about getting a diagnosis?
Get a folder or a notebook and research everything. There are pros and cons to getting an official diagnosis - like, did you know that you can't emigrate to Australia if you are diagnosed Autistic? And that during the height of the pandemic, an automatic DNR was put on Autistic people?! - so look into everything and decide whether you think it is worth it for you to go through the process. Autism is a recognized disability so you will then be protected under the disability discrimination act and it can help you get certain accommodations at work and such, but it isn't something you can 'cure' so don't think you will be just entitled to drugs!
While researching write down as much as you can, all of the traits you have that you think could be due to being neurodiverse, from childhood until now. Then if you are sure you would like to pursue an official diagnosis contact your GP. If at first they do not listen or are not helpful, request to talk to another doctor. Advocate for yourself and stay determined.

Did you go private or get it done on the NHS?
I did go with the NHS. After being on the list for over the estimated time I looked into going private but it was sadly well out of my budget. The NHS is vastly underfunded and highly flawed, however, I can appreciate how lucky and privileged I am to have had access to this free service.

How long did the whole process take from start to finish?
Pffftt so it's hard to estimate the full length as it was something that was talked about between our family for a good year or two before taking any steps. I did however first contact my GP in January 2021, I was on the waitlist by the end of February and my assessment actually happened in late July 2023. 
I was originally told that the waitlist was 6 months, in update letters over the year it was then extended to 12 months and I was eventually seen within 17 months. I am aware that there has been an increase of people talking about neurodiversity online and since I originally went on the waiting list times have increased. The time taken will also differ greatly depending on your county. I was seen in Northumberland.

How did you begin the process?
So to summarize some points I've already covered in bullet-point form:
- I talked about the possibility with my husband and parents.
- I researched a lot and kept a notebook and folder.
- I got in touch with my GP who sent me a quiz type of thing.
- I had a follow-up call with my GP to discuss my answers and she decided to refer me to AADS service.
- I received a letter from the Adult Autism Diagnosis Service telling me I was on the waiting list for an assessment.
- I was sent letters every 6 months or so to let me know I was still on the waitlist and the approximate wait length.
- I got a letter with forms to fill out and an appointment, just shy of 4 weeks before my assessment date.
- I attended my assessment and received my diagnosis verbally in person on the day*.
- I received my written report in the mail 4 weeks later. 

*This is not always the case and in most circumstances, they will go away to look over their notes and get back to you with the outcome at a later date.  

How does it differ from a child’s diagnostic process?
This I unfortunately cannot really answer. As someone without my own children, I'm not clued up on the way things are done for kids however it is a little more difficult being an adult. With kids, a lot of assessing is done by them being observed and their guardians and other adults discussing the traits they have noticed etc.
As an adult, there are forms and questions with scales and ratings and the whole thing can be done completely alone (though having a partner or family member who knows you well is helpful). In my assessment, it was exclusively questioning, however, I have heard of some adults in other regions being made to do tasks so it's worth looking into what your area expects. 

Is there more of an understanding of masking for adults?
So because my whole situation happened during and not long after 'lockdown' times, everything except my final assessment was done via phone or email - so amazing for me - which obviously meant I didn't have any experience with anyone.
My clinical specialist who did my in-person appointment also happened to be Autistic herself so she was totally understanding and from the get-go told me I did not have to look at her, I was allowed to take my shoes off and be comfy and in general, was given 'permission' (not that you need it) to do whatever I needed to do. This was the first time I have ever been aware of how much I mask and I cried at being understood. I can't say what it is like further afield but my county in particular seems to be great with knowing more about how adult autism, in particular, AFAB autism presents itself.  

Did you know beforehand that you had it/probably had it?
We were like 99% sure after at least 2 years of discussions and note-taking. Although I completely support anyone who is self-diagnosed, for some reason I didn't feel comfortable fully saying I was Autistic until a medical professional gave me that validation.
As I touched upon above, everything just clicked into place and the more research we did, the deeper I delved into the more things from my childhood that popped into my memory and made me so sure that this was the answer all along.

How does it affect your relationship (if at all)?
I'm extremely lucky to have the most patient and kind husband ever, and that has always been the case, but even after our revelation that I was probably Autistic, he was even more so. He has done research himself and knows me better than I know myself so although our relationship in general hasn't really been affected since diagnosis, my life has been affected for the better by him as he spots any triggers or changes in me and helps to regulate or removes me from situations that may cause issues for me. He's a big fan of the 'Spoon Theory' and drills it into me when I am trying to do more than I should be.
As I unmask a little he has never shown anything other than understanding. I really can't express how incredible he is and it is a daily struggle for me not to feel like a burden. I'll never understand how I got so lucky.

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That's all for now, and to be honest it's quite a bit to read so I hope the fact it is in question-and-answer format makes it easier to digest. If you have any other questions please do get in touch and if there is anything specific you'd like to hear about that relates to anything Autism just let me know!