Do I or don't I?

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....

  • Hi OddOne,

    Warmest welcome to our community!

    Thank you for sharing this with us. May I suggest looking at our information about autism spectrum disorders:

    https://www.autism.org.uk/advice-and-guidance/what-is-autism

    If you were interested in finding out if you are on the autism spectrum, you would need to have a formal diagnostic assessment. You may find it useful to have a look at the following link for further information about diagnosis and the benefits of getting one:

    https://www.autism.org.uk/advice-and-guidance/topics/diagnosis

    Furthermore, it is important the professional you see has experience of autism spectrum disorders. You can find details of diagnostic services on our Autism Services Directory in the Assessment and diagnosis section: http://www.autism.org.uk/directory.aspx

    If you have further questions, you may like to contact our Autism Helpline team. They can provide you with information and advice about getting a diagnosis. You can call them on 0808 800 4104 (Monday to Friday 10 am to 3 pm. Please note that the Helpline is experiencing a high volume of calls and it may take a couple of attempts before you get through to speak to an adviser.

    Hope this helps.

    Kindest regards,

    Eunice Mod

  • 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.

  • I would say if you share this with your GP you will be granted an assessment. Your granddaughter understanding you is a bigger sign, it’s found autistic people don’t have a difficulty understanding others on the spectrum.

    Concerning your granddaughter, make sure your family doesn’t sabotage her by calling her disabled only pointing out difficulties. Neurodivergence is a gift, because of the neurological differences we can think of things neurotypical people can’t. Most of the most creative people throughout history were among the neurodivergent community because we go outside the box. 

    There’s employers of organisations and industries actively seeking autistic people to work for them because of the abilities they recognise that nonautistic people don’t have, this video gives a good explanation.

    https://youtu.be/Xts1F-PoUNA

  • i think it would be wroth it. there's self acceptance. there's possible government benefits (i'm in the usa). hopefully you will find out about your strengths, weaknesses, sensitivities, maybe add, processing issues, etc... a friend of mine probably is asd - he seems to have no interest in an assesment, and seems happy, and seems to have accepted his weirdness. for me, my life has been miserable, and the assesment sort of helped, but what helped the msot was getting a therapist who is experienced in asd and committed to me.