I'm autistic, ask me anything

[AyEssDee]

married, mother, late-diagnosed (40s) - on a mission to raise autism awareness

What impact did getting a diagnosis have on your life? With hindsight, would you still pursue a late diagnosis again?

Yes, I would absolutely pursue a diagnosis again. It has enabled me to make sense of all the things that were supposedly "wrong" with me. Wish I'd been diagnosed in childhood, so many girls especially are still flying "under the radar", are misdiagnosed or have co-morbidities (eg depression, anxiety) diagnosed as the main "issue", without access to appropriate tailored help.

I have long suspected I may have aspergers but don't want to get a diagnosis as I feel I don't want that label. In what ways has it been beneficial to you?

What help have you had since diagnosis from GP etc? What did you have to go through to get diagnosed?

What things did you think were “wrong” with you?

Hi op, do you have specific special interests? If so how long do you stay interested in them for?

I prefer to see the diagnosis as a signpost rather than a negative label.

I have always felt different. Odd, weird, other, excentric, strange. And also told as much on countless occasions by parents, peers, teachers. Found education / employment difficult. Sensory difficulties (noise/clothing/temperature/open plan is absolute HELL).

I can now be kinder to myself knowing that certain things (many things) just aren't right for me. I'm very, very lucky to have found my niche though (working for myself in a specialised field).

I'm also late diagnosed with autism so will follow with interest. Is there any support for adults with autism in your area (beyond that for adults who have difficulties that mean they can't live independently at all or with lots of assistance.)

I certainly have special interests .

Currently my main interest is autism and ADHD and nutrition. I have a weird obsession with, and impeccable memory for, people's dates of birth. Also phone numbers. I remember tiny details of conversations for years. Encyclopaedic knowledge of song lyrics.

No support apart from antidepressants prescribed by GP unfortunately!

How did you go about getting your diagnosis?
I’m very curious as i think my DH would benefit from assessment, but i’ve no idea if this is GP or private issue. Tbh i’ve scored pretty highly on those online check-box ‘tests’, but wonder if it’s confirmation bias.
DS is awaiting his dx of HFA/PDA.

What was your ‘biggest’ / most obvious red flag for being tested?
Also how hard/ easy was it to get assessed?

Do you have co-morbid other conditions?

I have a friend who is autistic. Diagnosed at 46, now 52 and had a dreadful childhood (dysfunctional family to boot, time spent in care) with emotional abuse and being labelled 'trouble', 'stupid' and 'lazy'.
Friend has a number of additional conditions including anxiety, dyslexia, dyspraxia, borderline personality disorder, depression and a number of physical problems.
Since diagnosis it has apparently been easier to understand all of the conditions, and how to manage them, I'm told.

Like you, my friend is on a quest to raise awareness, and also like you, friend has very little support.

I don't think there was one big fat red flag.

My child (as yet unassessed/undiagnosed) showed a variety of unusual behaviours/traits, which kept throwing up "autism" and the more I researched it, the more it make sense and the more I recognised myself.

I got diagnosed at Lorna Wing (privately) after much research on HFA/Aspergers in girls/women as I was able to find the money and frankly couldn't face the - what I suspected to be - a long hard uphill struggle to obtain an NHS assessment and diagnosis.

VforVienetta - try GP first by explaining and taking in an autism quotient score. That's what I might do in hindsight.

Comorbid conditions - social anxiety and depression brought on by years and years of trying to fit in / social rejection (I do have friends though, honest ).

Physical issues: gastro issues, possible Ehlers Danlos Syndrome (another special interest currently, which is woefully underresearched and not fully understood - often linked to autism).

What's the one thing your parents could have done that would have helped you? My son (early teens) has his ASD assessment on Friday and we'll hear if he has an official dx, and I feel I'm struggling to prioritise all the things I want to do to help him, without overwhelming him!

Thank you for posting. I suspect that my DD might have aspergers. I've read that it's much harder to diagnose in girls. She has anxiety and is socially awkward. She is also severely dyslexic - I don't know if the two are linked though.

Ha! My dd (23) was diagnosed at Lorna Wing last year.

Have you had counselling?

Have you had specialist help with getting work?

We've found there is a massive gap in the market to bridge the gap between employers and potential employees with asd. Wish I had the wherewithal to set up a charity to fund courses for autistic people to find work.

What were you like as a child? Did you have early language? Or were you delayed?

fanominom

I wish my parents had been less critical and had tried to understand me more and helped me find the right path in life. They weren't bad but not hugely helpful either.

tobee

No, I never had any help. I got to 43 without a diagnosis after all and pursued that on my own initiative.

I get the "you can't be autistic" all the time, also from healthcare professionals including ones that should know better than to make flippant statements like that when they are clearly not experts on ASD in women.

Kaydogsdinner

I had no developmental delays and was an early walker and talker. I learned to read really well before school and have a great aptitude for language. Spelling and grammar are a particular strength of mine.

I struggled in my teens at secondary school (mental breakdown - very disordered eating - never picked up on though as not anorexia) and didn't finish A level equivalents (not UK). I did obtain a higher education but it wasn't through the traditional channels and I've always felt like a failure for not having had a high-flying corporate career like some of my peers at secondary school.