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!
