I was diagnosed autistic at 41 AMA

[mollynolly]

Anyone interested in late-diagnosed autism in women can put your questions here and I will do my best to answer them.

My DD15 has been waiting for over a year for a diagnosis. We know she is, if you read the right documents, it's staring her in the face!!

She has had an initial psychologist report just not a full one. The initial one recommends full report as she scores within range for all the tests they did do.

Filling in the forms annoyed me so much. (More later) I am not autistic no matter where I sit on the spectrum... I can clearly see traits direct from her paternal grandmother now deceased. We have no contact with her father so the traits aren't being normalised if that makes sense. Dd is firmly a round peg in my family square hole.

Life is getting harder for her as she approaches GCSE. There's a lot going on and she isn't coping so well with anxiety - doesn't eat much, pulls her hair out. Previously she has picked and bitten fingers and nails, shredded her cuddle mussie.... sucked hair.

Yet she does cope, has close and long term friends and sometimes I think I'm making it up.

I don't mean to waffle about my daughter but could you go through my points and tell me if these sort of things resonate for you growing up?

The testing process annoys me because every question about her isn't about HER. It's all boy based, negative behaviour based - how many exclusions, how many physical incidents, how many school refusals. If I were to turn that on its head, I would be asking
Has she ever broken a rule (no) or told a lie (no) or been frozen to the spot (often). The testing process is really missing the point I feel for autism in girls.

@grandmashotdoodlebugs My DD sounds alot like yours. We're going for a private assessment as it's 4 years for a NHS assessment here and I'm not even sure the GP would refer her as she isn't violent or causing issues at school. The clinic we are using actually specialises in autism in girls and several of the professionals have written journal articles on the topic I would be having a Google and seeing if you can find anything similar near you.

DD has always been quirky, never broken a rule and stoic, until she started High school and things clearly became more difficult.

GCSE is when it all fell apart for me @grandmashotdoodlebugs - I was in a very dark place with disassociation, self harming and suicidal thoughts. My mum took me out of school for a few months, even though it was GCSE year, which saved my life I think. I spent those months reading voraciously and every week my GP would have me in for ten mins to check on me. He prescribed me a baby dose of a SSRI and it did help.

I passed my GCSEs. Excelled in English and humanities subjects. My mum came with me to speak to 6th form head and we put a bit of a plan in place to keep me away from bullies, explain the mental health stuff and give me a bit more pastoral care. It really helped that my 6th form head was my English teacher because he checked in on me. Once I got to A Levels I could smell my way out - uni. So I worked very very hard to get there.

My mum expected me to call her and ask her to come and get me every single night on my first year of uni. But I didn't. I think being at a uni just an hour from home made me feel safer, I could get back, if I needed to. But I loved it so much there that I didn't!

It's times of transition that are really hard. So GCSE. A Level/college. Uni. First full time job. Each one is like waiting for a bomb to go off, so ease her in very very gently. Tell her she doesn't have to do everything all at once, or on the same timeline as everyone else. Tell her she can pursue the things she likes and that she will find her way, eventually. If she needs to hide for a bit, let her hide. Then coax her out very very gently.

So annoying. Even GPs can be really misinformed about autism. How about doing a couple of screening tests and showing your GP your scores?

AQ - embrace-autism.com/autism-spectrum-quotient/

The RAADS-R - embrace-autism.com/raads-r/

@mollynolly what fantastic advice - that is so reassuring and makes me feel better as a mum. Thank you

Hey everyone, I am also a late diagnosis (37). I just wanted to say, with waiting lists, you can ask for an NHS Right to Choose referral if waiting lists are huge in your area and look at other diagnosis options. psychiatry-UK do adult diagnosis, there are several who have Right to Choose/NHS agreements in place along with some who do child diagnostics as well. It means you get referred over to one of the private providers but it is still NHS covered as long as they have a formal agreement with the NHS.

@Jellycats4life thank you, I scored 38 on the AQ. Think I’ll make the appointment and see if I can get him to refer me to someone else

Hello op. Late diagnosis at 35 here. Do you feel lonely?

My cpn told me she was sure I was on the autistic spectrum. I also have a mental illness and she said at this time it may not necessarily be good to get yet another diagnosis as the one I have hinders me.

Occasionally. I have two small children so I am never actually alone. But yes, in my head I sometimes feel lonely.

I have friends who I speak to daily, though my family and friends are all miles away in the north of the country.

I felt very very lonely as a teenager. Lonely and broken. But uni was a bit of a fresh start in that respect.

Yes to this, I was assessed by a private consultancy, paid for by NHS.