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.

What led you to bring diagnosed? How has diagnosis changed your life?

I'm pretty certain (as is DD) my 21 year old DD has Aspergers/autism. GP just keeps telling her if she had it it would have been diagnosed by now. How did you manage to get assessed?

I have an autistic child and a SEN education work background. Extensive reading after my DC first began the diagnosis process led to me occasionally reading about autistic traits in girls and I ticked nearly every box. I was so worn down from advocating for him that I kind of mentally shelved the idea. Had a few really tough years sorting out DC and school etc. And a new baby in the mix. Eventually had time to really think about it and get the ball rolling. It took years.

Diagnosis HAS changed my life! I feel so at peace with myself now. The things I have struggled with throughout my life weren't hard because I'm crap, or broken, I just work differently and now I know that I can think up new or different approaches to things. I'm also much better at advocating for myself now.

I have a confidence that comes from knowing that even though I have this condition I have had a mostly very happy and fulfilling life. I do struggle, it's part and parcel, but on balance I wouldn't change much about my life.

I would change GP!

It would really help to find some good online resources about autism and how it presents in girls (I might try and link some later if I have time). She could then make a list of all the traits she has and present THAT to her GP with a 'So please refer me now' rather than 'Can you refer me please?'

Do you think a diagnosis as a child would have hindered your chances socially eg getting married and getting jobs? Is it easier to have a diagnosis after you are established in career and relationships? Do you think it might put people off enter into a relationship with you?
The reason I ask is I think my 15 year old daughter might be autistic. I am not sure whether the advantage of her having a label (and I can see the advantages) outweighs the disadvantages socially. I don’t think a label would lead to any interventions for her at school - she functions well.
I can see the advantages of her knowing but I also see a lot of disadvantages.

Could you list some of the traits / symptoms that led you to rightfully believe you are on the spectrum? I'm sure that I am, I tick a lot of boxes, and like you, believing that my daughter is on the spectrum is what led me to believe that I am, too. I only have two cousins and both are autistic with diagnosis' and my brother has ADHD. So I guess it runs in the family

Did you find the assessment process stressful? I'm on the waiting list and very intimidated by the thought of assessment? Also did you have a relative be part of your assessment process?

If I'd been diagnosed back in the Nineties? Definitely would have hindered me, as nobody really understood ASD back then. It would have been a bogeyman in my life. That said, I spent my entire teens thinking I was broken beyond help, and to have known that I'm just different, not broken, might have been nice. Pretty sure I'd have been bullied even more if it had been common knowledge but maybe my teachers might have been a bit more sensitive with me, and kept an eye on my pastorally more, which would have been a big help. If accommodations had been put in place in exams I probably would have done even better, I was a bright student, but those As at GCSE could have been A*s.

If I were a fifteen year old now? 100% go for diagnosis. So many things could be put in place for me now that would've benefited me massively. Teachers aware, peer groups, local SEN nights for teens, masses of literature to read on the topic, EHCP that could have secured practical help for me in school. And there's a whole community out there on the internet and in the real world that I could've been a proud part of. I'm on a local Facebook group for autistic women and we all have different stories, but the similar strands running through them unite us. And we all laugh at ourselves and our idiosyncrasies.

Posting to lurk a bit - I have the forms to fill in (daughter autistic and I'm a similar age) but keep putting it off as I'm worried I wont write it correctly to jump through the hoops!

I used ot do the "are you autistic" questionaires and come out as not-autistic simply because I answer the questions wrong.

For example -I think I'm good at small talk, I love chatting to a new person and getting onto a topic of mutual interest. I mentioned this to a friend who said "FunctionalSkills" we have never had small talk !!! Apparently even in my classes I turn the conversation to how people really are and I go deeper than what people usually think of as casual conversation. Oops.

I just wonder how many other Q I might answer "wrong" as from my perspective I do do xy or z ...

Highly sensitive to noise.
Selective mutism as child.
Fear of change or new things, so intense that it makes me physically ill - since as long as I can remember.
Obsessions/special interests in things ranging from rabbits to Ghostbusters to Tarantino.
Amazing long term memory, meaning I win every pub quiz I do. But shit short term memory.
Home is my sanctuary and the only place I really feel safe.
Intense attachment to close family.
Hate eye contact.
Don't like hugs much either.
Never sure what I should be saying in conversations and have a kind of narrative running in my head the whole time that's analysing and criticising.
Speaking too loudly at times. Or too fast.
Finding weird stuff funny.

My DM would've been perfect because so many of my traits were evident as a child, but my older sister agreed to help and they had her fill in a form as part of the process.

The process was fine. I kind of enjoyed it!

Oops meant to say big sister helped as my mother is dead. Not uncooperative!

Are one of your parents autistic do you think? Research shows that many cases are hereditary.

I’m going for diagnosis this year at 42.

Did you do the ADOS assessment?

We have it in the family on my mother and father's side. I have cousins who are autistic and there's an uncle I'm pretty sure is too. In me I think it comes from my mother, but she was badly abused as a child and had to learn to mask everything. She remembers her mum forcing her hands not to move too much when she talked, for example. I think she might agree with me too, if she were here. We are pretty similar.

It's also in my DH's family and he is also neurodiverse!

I'm looking at my assessment notes and it isn't clear. It says 'The ASD assessment offered by (well known place that did assessment) is a multi-level evaluation process. It comprises an examination of relevant health records, a series of pre-assessment questionnaires completed by Mollynolly and the collection of other relevant collateral information.

On assessment day, a clinical assessment, which includes the administration of appropriate autism diagnostic tools by a senior psychologist or psychiatrist, and an appropriately trained assistant psychologist, takes place. Finally, diagnosis outcome and signposting information is discussed with Mollynolly'

🤷🏻‍♀️

My DC had ADOS and it definitely didn't feel like that at all.

Do you have a current special interest and what other special interests have you had through your life?
I seem to cycle through about 5 different ones.

How long did you have to wait from the time you saw your GP for referral to actually getting assessed?
I would definitely be diagnosed with ASD but have been told the wait is so long.
My son is severely autistic and I carry so many of his traits, but it's always been put down to my mental health growing up

If you were able to link any sources about diagnosing ASD in girls I’d be grateful OP.

The reason I asked is apparently tbr clinic I’ve chosen uses ADOS (amongst other things). Nervous about having to sit with a picture book and make up a story!

So much of what you say resonates with me. I have two autistic kids, undiagnosed neurodivergence on both sides (I think my mum has a ton of autistic traits, as did my grandad before her).

The things I have struggled with throughout my life weren't hard because I'm crap, or broken, I just work differently and now I know that I can think up new or different approaches to things.

This is exactly why I’m going for it. I’ve spent my entire life feeling like a weirdo (or maybe knowing I’m a weirdo!) and wondering why I’m not the sort of person people warm to. Of course I blamed myself for being too awkward, too nerdy, too aloof, too anxious, too uptight…

I definitely didn't have to look at any picture books @Jellycats4life!

I have to go and finish bath time and put my kids to bed now but might pop in later this eve. If not I will try to get back to people tomorrow.

My DD was diagnosed as an 18 year old sadly 3 years after she dropped out of school couldn’t manage the huge school environment. As a child she showed many traits but her masking skills in public were fantastic until it got too much for her. . I’m glad you’ve got your diagnosis Op. Lots of traits in her dad’s side of the family. I found the booklet on the link below really useful to give to family to explain why girls present differently. How are you managing life now op & did you make it to Uni? My DD would love to go to Uni at some point

nasen.org.uk/resources/girls-and-autism-flying-under-radar

I didn't just make it to uni @kkneat - I made it to uni three times! (BA, MA, PGCE)

I know I'm not the OP but just wanted to share my DS experience. He was diagnosed at 14 after dropping out of school at 13.
He went to college and did his English and maths gcses and is now at university. He started uni a year after his peers.
The universities were very interested in his unusual way of getting his ucas points and got interviews at all the ones he applied for.

@mollynolly from the list of symptoms you posted earlier, I could be you! I’m trying to get a diagnosis at the moment, my GP had me write him an email with all the things that I think might possibly indicate ND, but so far he’s saying none of it is definitive, and he’s sent me two patient leaflets about autism and adhd, with a request to highlight which symptoms I think apply, and make an appointment to discuss. Problem is these leaflets only have the few ‘major’ stereotypical symptoms on, and are aimed at diagnosing children. 😕