Published on 12, July, 2020
Hi,
I'm new here, so thought I'd say hello and maybe get a bit of advice. I'm a 60 years old woman and for the past 3 or 4 years I have been convinced I'm on the spectrum. My granddaughter was diagnosed a couple of years ago, after many, many years of fighting to get her help. During those years I spent most of my time researching and, as you do, I ended up going down lots of rabbit holes. I finally ended up reading about women with autism and how their traits can differ from men. I've since read, and e watched, a lot more and all I ever seem to think is, "That's me. That's me. That's me!". I was considered a shy child and I grew up accepting that I was just shy. I didn't make friends easily, couldn't keep them when I did manage it, couldn't understand what they wanted from me, much preferred my own company, didn't play with dolls or do 'dressing up', or anything like that (couldn't see the point), spent most of my time in my bedroom reading or doing maths. I was very detail driven. Everything had to be perfect (can remember rewriting a maths homework around 6 or 7 times because I kept making silly, small writing mistakes and I couldn't cope with leaving it because it spoilt the perfect tidy look!). I hated background noise and bright lights. Couldn't do small talk. Was always being called weird or odd or stuck up. All these traits, and more, followed me into adulthood. I never thought anything about it until I started researching my granddaughter's autism when I was suddenly struck over the head with the realisation that I had been reading about myself. I've taken the AQ tests and scored high on both of them. I'm the main one in the family who can handle my granddaughter, and keep her calm, because I think, I understand how she's feeling for the most part. She often tells me she thinks we're twins because we do the same things. Things that other people don't do. Bless her. I've talked to my partner about it, she isn't convinced though does concede that I have a lot of the traits (for instance, she hates that I'm always rocking!). So I'm undecided. I don't know whether to approach my GP with a view to being referred for an assessment or not. I don't work due to a chronic health condition, so I don't *need* an assessment, as such. I just don't know. Would it be worth it? I guess it might help my self acceptance. Maybe. As you can see, I'm torn. Any help, advice, anecdotal stories welcome....
This sounds all very similar to my own belated self-identification at age 59.
I would be inclined to trust your own assessment because a lot of diagnosticians tend to favor a partnership model; in other words they believe that most adults are quite capable of understanding themselves.
But the following is perhaps the real issue you are going to have to deal with; you could just remain as self-identified, you could go looking for a private diagnostician or you could go down the potentially blind alley of an NHS referral. (I opted for the middle option because as a long-term expat I am not eligible for NHS attention.) Many 'private' diagnosticians are actually the same people who do NHS referrals. The waiting list for private assessment is usually quite a lot shorter. It can a bit expensive going private, but you do have to balance that against the stress of waiting for up to two years with an NHS referral
My own experience with private was that the clinician spent very little time considering whether I was on the spectrum, and a lot more time thinking about the actual constituent elements of my self-identified situation. I am not the most financially stable of expats, but I have found in the last 4 years (since a private diagnosis) that there are distinct advantages in finding a diagnostician who believes in a strong element of post-diagnostic support; especially if that involves your associating with other obviously neuro-diverse people. That kind of support doesn't necessarily have to be paid for up front, as it often involves a sharing social network.
You could also just go looking for those support networks yourself. Self-acceptance is a widely respected 'position' these days.
I am glad that I opted for a private assessment. It has allowed me to make some important decisions about my own future. But you might still find that your doubts don't entirely disappear. In my case, those doubts have lead into further self-identification; as I have realised there is also almost certainly some AD(H)D involved; but that really doesn't negate my earlier self-identification and subsequent diagnosis at all.