I’ve been brooding about writing this post for a while now. I’ve also rehearsed several different ways of phrasing things for this post in my head. I’m now finally sitting down and writing which means some of this will be a stream of consciousness.
Last year, around this time actually, I went from wondering if I was autistic to saying out loud that I thought I probably am autistic. I was off work with stress and anxiety and decided to request referral for an adult autism assessment. As is pretty normal in the UK I then had to wait for a first appointment. In the meantime I worked on improving my mental health and managed to return to work late May last year (2015).
I had my first autism assessment appointment on 4 September 2015. I had been sent material in advance that told me that this would be an initial assessment. At the end of this first appointment I would be told that either I was not autistic or that there was enough evidence from this first session to investigate further. There was enough evidence to investigate further.
This was a huge relief for me. At least I now knew that there was something in my behaviour and history that indicated I could be autistic. I had discussed this with family members who were very supportive and with a couple of female autistic friends who said that in their opinion it would not be a surprise for me to be diagnosed as autistic. But this was verification of the possibility by experienced professionals.
The process continued with several other meetings. My mum came with me to all but one appointment which was great as I found the process extremely stressful. The appointments were an hour and a half in length and I didn’t feel very comfortable with the person who led the interviewing process from the start. The process was completed in mid November and I was told that in their opinion I did not meet diagnostic criteria (for those interested I was assessed against the criteria for ICD 10 F84, Childhood autism and ICD 10 F84.5 Asperger’s Syndrome). It had become apparent a couple of meetings before that this was likely but they continued the process for me in order to provide me with some level of information about my ongoing difficulties.
I didn’t get the official report from this process until mid December and it’s taken some time to process this result.
I’ll be clear here, I am disappointed with this result and I don’t think they have got it right in my case. Verbally though in the last appointment they did say that I do present in an autistic way and that they wouldn’t be surprised if a couple of years down the line I got diagnosed via another route. Right at the start I was told that diagnosing adult women was extremely hard. At the end they confirmed that there is a level of subjective opinion about the diagnosis too (which having gone through this for both my kids I was already aware is the case).
The report confirms that I have social anxiety issues and recommends some form of talking therapy to address issues related to emotional literacy and self esteem. They also recommended I do some self help on anxiety management.
My children both knew I was going through this process. My daughter wanted me to be diagnosed so that we would be more alike. When I told her (she’s 8 by the way) that I didn’t get the diagnosis she put one hand on my shoulder and said with a serious tone “Never mind mummy, you’ll always be autistic to me”. My son also said it didn’t matter as I was still weird. Both of them sympathised with my disappointment while making sure I knew it didn’t really matter to them, I was still part of the club as far as they were concerned. I’m extremely proud of this, not just because of the sensitivity they both showed but also that they clearly see being autistic as something to be proud of and rightly so!
I’m glad I have gone through this process even though it was difficult, even though I didn’t come out with the diagnosis I had hoped for because it has verified that I do have challenges with social situations. Whether this is inbuilt or as they have said in the report a belief that I have developed is not so important at this stage. The reality is that in either case I have social anxieties and these are now recognised by others.
Part of my anxieties is a fear of not being “enough”. Often that’s not being good enough but it can be not social enough, not autistic enough, not neurotypical enough or all manner of things. Logically I know this is something I impose on myself, judging myself against a hypothetical standard others almost certainly do not judge me against. Emotionally though, knowing that is probably the case doesn’t help. I still feel I am not “enough” to be clearly one thing or another. I am working on emotionally and spiritually accepting that maybe being in a place between one state and another is where I am meant to be and where I can be most useful. Maybe having not enough of something, not being good enough at something, will help me be a bridge between one thing and another.
2 thoughts on “Autism and me”
Your comment about not being ‘enough’ eloquently captures the sense of not gaining the ‘official’ recognition of your condition and therefore that it has not been acknowledged. The acknowledgement of your daughter is of course more important in the sphere that really matters. But the feeling of being between that acknowledgement and the lack of it by the people who can make things happen must be frustrating.
I know about the battles with officialdom because of the processes that had to be gone through to get my autistic grandchildren into a special school (the oldest is now nine but still doesn’t speak). I know it’s no consolation to say that those people speak for no-one but themselves but whatever they choose to acknowledge or not to acknowledge, your own sense of who you are shines through nonetheless.
I trust that writing this post has been a step on the way to your ongoing work with finding and affirming your unique place on the spectrum. The comments by your daughter and son show a touching and lovely expression of empathy. Perhaps part of your journey is as a boundary walker between the two neurological worlds, helping each to better understand the the other. Having a name for what one is can be both constricting and liberating, often and paradoxically simultaneously and sequentially. The important thing seems to be to live bravely and authentically.
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