I'm autistic, ask me anything

[AyEssDee]

Oh I know EssexMummy, my DN has severe autism, I didn't mean to undermine how hard and terrifying it can be.
I just don't think turning on each other for having varying degrees of a disability is the answer. We need to be fighting together for better diagnoses, support, resources, respite, justice etc.

I have also wondered whether the big ASD umbrella covers a little too much.

I can'tbegin to imagine what it's like to care for, and worry about, a severely impaired/disabled child. Hats off to anyone goin through that.

However, while my "burden" is clearly a lot lighter, it is still a burden. I struggle every day. People don't take to me easily, sure I have a (very) select few friends, but I can literally feel people shying away, bristling or otherwise distancing themselves from weird ole me on a daily basis. And it's happening to my child too. But we are just expected to fit in, and it's just not possible.

Sensory difficulties? That child is spoilt, you're a bad parent. Difficulties socialising? It's because of xyz you as the bad parent have or haven't done. And so on and so forth.

"High functioning" autism (or whatever else it should be called) is very poorly understood, especially in females, and any proper support and understanding is so, so, so difficult to come by.

In a Different Key - the story of Autism, is a great book that discusses how the current DSM definition of Autism has come about and touches on whether we still need an aspergers/similar definition. It's an incredibly engaging read.

OP, no questions from me but have found this a really interesting thread, thank you so much. My 8 year son has aspergers (and ADHD) and is just the best kid. Can't imagine him any other way.

I can't remember who asked me, but I volunteer as peer support and digital media (including writing) for an autism charity. I'm not paid, but I'm still professional, but no I've never been paid as a peer support worker. My experience is lived, as an autistic person and as the mother of autistic children with varying levels of disability.

The shopping point is multifaceted. I have ADHD as a comorbid, so my executive dysfunction is significant which is the biggest issue. Add in my sensory issues, pain levels (I am being assessed for a neurological problem too) and the fact I also have two children in tow who have the same struggles but worse, and shopping is just hell.

Op, thank you for replying but my boy is quite poorly with Pnuemonia and I’m feeling quite distracted. I will come back to the thread later though.

Get well soon, Hattie's boy!

I’m also 99.999 etc % sure I have high functioning autism. From my earliest years everything about me just fits to the letter. My husband is my absolute rock, only he sees my daily struggles and supports me like no other while I mask to the point of sheer exhaustion.
People (family) start rows with me from time to time because of things I’ve done wrong which I can’t seem to make sense of but on the whole I think I mask well.
However I’ve learned to cope within my limitations, I can hold down (actually over-achieve at) my job, I’m a good mother etc I’m “doing life”.

Is there a benefit to going through the motions and getting formally diagnosed? If there’s no real support after the diagnosis is there any real point in stretching the NHS further for it to be made official? I could afford to go private but I wouldn’t want to spend family money on that.

Hi Condragulations.
I feel more 'validated' having an official confirmation, but no, there are no other benefits. The diagnosis has helped me read up on specific things that I now know are relevant to me and my child (teachers don't see autism but do notice sensory issues and other unusual characteristics - spiky profile - but don't put 2 and 2 together due to lack of training). I did it for my child mostly.

If you are happy not having that confirmation, then it would indeed be just a waste of money, public or otherwise.

My husband - who knows me the most- and I are convinced of it. I know my family think it’s just a new fangled label to make something out of nothing. My cousin’s daughter is in the process of being diagnosed with asberges syndrome and they basically all rolled their eyes and said they didn’t “see it” when she told everyone. So it’s not something I would share with them as I can’t deal with the eye rolls.

I can understand wanting the validation because although I’m quite sure of it, I’d never dream of saying “I have autism” without a diagnosis. I wish it was a case of going to the gp and being diagnosed on the spot but as it’s not quite so simple I think I’ll just keep plodding on as I am.

I’ve loved this AMA

Get well soon, Hattie's boy!

Thank you. He's up and about today and its a great relief.

I could afford to go private but I wouldn’t want to spend family money on that

You're the best person for the money to be spent on. Its an investment in you. Its a family investment.

Ah thanks hattie I think if at the end of it there was a big change due to the diagnosis I would really consider it but it doesn’t sound like there would be (as I already cope so well on the surface)
When we have more disposable income and the children are older I may consider it for the future though and/or if I feel like I’m struggling more.