Coming to terms with Autism

[Tronsformer]

I’m 36 and only 72 hrs ago acknowledged my Autism (or whatever it is) and that I need to try and understand my condition and find a framework to help me for the rest of my life. I’m currently in the process of assessment and it looks like I’m a few years away from receiving a diagnosis. I went to the Autism Show last week and was advices I should reach out to others who are going through, have been through similar experiences with Autism.

So I was hoping to understand how others came to the realisation that they are either Autistic or are on the path to getting diagnosed.

I’m also aware that I am very new to this ‘world’ and don’t understand a lot of the concepts such as ‘masking’ ‘stimming’ and Executive function etc. ( I think I have formed my own definitions and reasons of them)

Apologies for the long word count (I’ve realised that this is a trait which I think is linked to my autism)

And looking to connecting with others

Thanks

[NotJim]

Hi Tronsformer,

Nice to meet you. I went through something similar when i got my diagnosis a few years ago.

I think how you’re approaching this all is really good, what with reaching out to others and looking to understand the condition (whichever shape/form it may take for you).

I decided to seek a diagnosis as I started university because I anticipated I would find somethings difficult and if it turned out I did have the condition then there might be resources I could access that would help me.

I got diagnosed through the UK system as an adult and it took just over a year in total I think; going through various levels of assessment from talking to the GP, then social workers who did an initial assessment and confirmed that I should go on to the proper diagnosis. Then went for the proper diagnosis meeting, had a long talk for a good few hours with the diagnosis guy who asked lots of questions and I had to fill in a lot of forms too (lots of tick the appropriate box kind of things). Then had to wait about 6/7 months before a letter came in the post confirming they’d diagnosed me with high functioning autism. Bear in mind this was how long the process took in 2017. Waiting times and the usual gaps between those assessments and meetings might be different now thanks to the effects of covid, though I can’t confirm that.

(High-Functioning means it’s the “milder” end of the autistic spectrum, I can function in day to day tasks and situations and don’t need assistance or care workers etc).

I personally found that getting the confirmation in the diagnosis helped some things make sense but also raised more questions. Looking at my behaviours, ways of thinking, ways of approaching various things in life now knowing that my brain has a particular way of operating means I was reevaluating everything i’d previously thought about how I acted and responded to things.

Autism is a completely subjective conditon, and although there are various similarities in some behaviours or experiences people go through, your experience with it will also be entirely your own, which is quite cool in a way. (and also a pain in the bum at times too. That’s just the nature of the condition as i’ve learned from my experience. It’s got some amazing pluses and some frustrating challenges. It’s like any part of life; as you continue to grow and change, so will your understanding of yourself, and in turn your autism/whatever condition. I also believe your autistic behaviours can change and grow as you do too.)

In terms of getting support / a framework to help you, I reckon that it will need to be something you yourself can have a hand in constructing. Your needs will not be in a one-size fits all package, no one knows you better than you do, so it could be good to think about what sort of things help you, what don’t, what you’re comfortable with doing and what is outside your comfort zone. It’s also worth bearing in mind any current plans/coping strategies/methods of dealing with day to day scenarios should be ready to be adapted as life throws new and interesting things at you, and you also grow and know yourself more. For example, the strategies/framework you make now may not suit the you in 6 months, 1 year, 5 years time. So rather than focusing on a framework to have for your whole life, it could be better to think about what will help you here and now.

If you do get a positive diagnosis for autism or whatever conditon you may have, I would ask as many questions as you can to the people diagnosing and helping you through that process:

What support services are available locally to me? E.G., support groups, websites, local and national organisations etc.

What can I do if I’m struggling?

Who can I contact if I have more questions?

The more questions you ask, the more answers you’ll hopefully get. And you can choose which resources feel best for you.

There’s also plenty of good organisations online like The National Autistic Society and Wrong Planet, plus things like Facebook pages and forums made by and for autistic folks. A search around Facebook can bring up some examples.

I hope this helps in some way (sorry it looks like i’ve beaten you on the long word count(!))

(PS, a quick note about those tick-the-box forms, if they’re still using them. I found some of the answers offered didn’t allow me to fully describe the difficulties i was having. EG., can you confidentally answer a telephone? Yes or No. I can answer a telephone but have to put on a persona in order to do so. There was no option to explain this, so i wrote in the margins. The diagnosis system isn’t perfect. Sometimes it’s good to make sure you’re making yourself heard. It can be good to be persistent, and do what you need to do in order to make sure the diagnosis people/ assessors are getting the clearest and most honest picture of you possible. You shouldn’t have to bend your answers to make them fit the boxes they’ve given you.)

[Tronsformer in reply to NotJim]

Hey NotJim

I really appreciate you taking the time to reply and also for your thoughtful consideration. What you explained and shared is super helpful and shed light on some aspects I was unaware or didn’t even think of.

Many Thanks

[NotJim in reply to Tronsformer]

You’re welcome! I hope you can get a positive understanding of yourself and that it helps you be happy and live life to the full