I'm an autistic adult, AMA!

[witchesgoose]

Thought this could be a useful thread - I was diagnosed in my late twenties so neurotypical/allistic (non autistic) people can ask about what it's really like, and if I can help one person with an autistic kid/teenager/young adult I'll be happy :)

There's lots of misinformation out there written by neurotypical people on the subject, so thought it would be helpful to hear it from the horses mouth so to speak :)

@Curioushorse

OP thanks so much for this!

I have recently realised my SIL may well be autistic. I actually suspect I'm not alone in this thought. I'd be surprised if she doesn't think so herself as, contrary to the stereotype, she's very reflective- perhaps overly reflective.

There are a number of reasons I think this- but actually a lot of it's really sad. She spends ages before social situations preparing questions to ask people, for example. She told me this one day as though it was normal- but since then it's been really obvious to me that she has 'coping strategies' like this for all social situations. They work really well and people think she's awesome- BUT, she can't sustain it and usually goes to bed at 9. Or if a social situation happens spontaneously she often doesn't attend or goes a bit nuts. She growled at me like an actual animal once, for example, because it was raining and we changed the time for a walk. I've seen her bashing her hands against a wall/ crying etc following fairly normal (and not particularly unpleasant) incidents.

Anyhow, there are loads of other things- but she also hasn't been able to have a normal job interacting with people.

My preferred plan is to say nothing- but occasionally I wonder whether she might be happier if she got a diagnosis. I do think she's miserable a lot, and feels like she's the weird one......I'm not sure she is though. If I'm right, then every single one of her odd behaviours is actually not her fault- and we probably made it worse. Have you got any advice?

Just an idea...

Ask what your SIL wants. If she wants a dx- advocate for her if she needs you to.

If she doesn't, be there for her and still offer to advocate for her.

@PinkyU

I detest self diagnosis. I see so many people who self dx (or self dx their child) because they have some traits but not enough for a diagnosis.

What it does is give society a false view of the difficulties of those who have been assessed, met the stringent criteria and been given an official diagnosis.

Society ends up with the impression that autism is just feeling uncomfortable in crowds and being literal. It allows society to have unrealistic expectations of autistic individuals to manage because they read numerous accounts of self dx people who hold stressful jobs, have partners and families, “have” to socialise but just manage etc etc. The self dx community provide such a damaging narratively autism to the autistic community IMO.

I think you're so, so right. I think it's vaguely condescending in a weird way I can't quite express- both to autistic people in general and to anybody being 'diagnosed' by a non-expert like me.

Just hard yes to you completely.

(Doesn't stop me feeling worried about my SIL though. I think you've just confirmed my decision to say nothing though- even if I can see she's sad)

@PinkyU

I detest self diagnosis. I see so many people who self dx (or self dx their child) because they have some traits but not enough for a diagnosis.

What it does is give society a false view of the difficulties of those who have been assessed, met the stringent criteria and been given an official diagnosis.

Society ends up with the impression that autism is just feeling uncomfortable in crowds and being literal. It allows society to have unrealistic expectations of autistic individuals to manage because they read numerous accounts of self dx people who hold stressful jobs, have partners and families, “have” to socialise but just manage etc etc. The self dx community provide such a damaging narratively autism to the autistic community IMO.

Same, I find self diagnosis nonsense, say you struggle with x and y, but don't say you're autistic. You summed up for me better than I would put into my own words but I find it's damaging.

@PineappleWilson

How long did it take you to get a diagnosis please? The NHS website on adult autism says there can be lengthy waits for assessment. Just at the start of this, having an assessment for my DC and realising how many of their behaviours mirror mine.

Initially I was quoted 9 months but my GP put a rocket up their arse due to my severe ptsd. Then it was about 2-3 months to getting my dx :)

@witchesgoose thanks so much. I'm going to read this thread with interest and just be reflective about it.

I'm confirmed that I'll just keep being quiet. I've asked the question here only because it's anonymous! I wouldn't even mention anything in the family.

My vague dilemma comes, really, only because she's clearly so miserable.

@PinkyU

I detest self diagnosis. I see so many people who self dx (or self dx their child) because they have some traits but not enough for a diagnosis.

What it does is give society a false view of the difficulties of those who have been assessed, met the stringent criteria and been given an official diagnosis.

Society ends up with the impression that autism is just feeling uncomfortable in crowds and being literal. It allows society to have unrealistic expectations of autistic individuals to manage because they read numerous accounts of self dx people who hold stressful jobs, have partners and families, “have” to socialise but just manage etc etc. The self dx community provide such a damaging narratively autism to the autistic community IMO.

You are entitled to your opinion, can I ask if you are autistic?

@Curioushorse can you do a conversation starter with your sil around social anxiety and provide her space and opportunity to discuss how she views her behaviour?

(Not to say you haven’t done this but with inlaws it can be fraught)

Super impressed peeps actually want to know. Thanks guys for asking and listening!

Totally random question and I don't mean this offensive in any way. Can you "spot" other autistic people? For example people that might not know they are?

I worked with an autistic person who used to do this!

What do you wish had been different in your childhood for you?

@MyMushroomsInATimeSlip

Totally random question and I don't mean this offensive in any way. Can you "spot" other autistic people? For example people that might not know they are?

I worked with an autistic person who used to do this!

Yes 😝 parents find this somewhat hilarious when I admit it, even down to a PDAer 🤣

I think we can be naturally drawn to eachother too, all of my closest friends are autistic, adhders or dyspraxic 🤣

@PinkyU

I detest self diagnosis. I see so many people who self dx (or self dx their child) because they have some traits but not enough for a diagnosis.

What it does is give society a false view of the difficulties of those who have been assessed, met the stringent criteria and been given an official diagnosis.

Society ends up with the impression that autism is just feeling uncomfortable in crowds and being literal. It allows society to have unrealistic expectations of autistic individuals to manage because they read numerous accounts of self dx people who hold stressful jobs, have partners and families, “have” to socialise but just manage etc etc. The self dx community provide such a damaging narratively autism to the autistic community IMO.

I agree wholeheartedly.

Do you have children OP?

I'm considering asking my GP to start the process of diagnosis.

Can I compare notes with you? Is that ok?

Do you struggle to recognise and understand facial expressions?
What about emojis? I had to get a friend to explain what each one means.
Do you find it hard to memorizethe steps or moves for a dance? I can manage 2 or 3 on a good day.
On the other hand I can memorize number plates and phone numbers without trying because I always see a pattern in them.

@PinkyU we have had that space in the past- but I can't imagine a situation where I'd be able to bring that up now without sounding like a condescending cow (which I possibly am!).

I really like my SIL, by the way. She can be a really nice, fun person.

If there is another 'incident' this Christmas (where she growls/ cries/ shouts etc) then I might mention something to my brother.

But my nephew has been referred for testing by his school- so if he gets a positive diagnosis, then it's likely she'll come to a similar conclusion (if she hasn't already). Nephew's 'symptoms' are very different from her's though.

Thanks everyone for even replying to me! It's stuff I hadn't really even formulated myself, and you're really helpful- and really interesting.

Hi OP,

What I’m interested in and I’d be glad to hear your view, is do you feel the term autistic is too broad? And by that I mean, there are autistic people who have jobs, mortgages, families etc and autistic people who are non verbal, can’t live independently etc. Would some sub groups be helpful? One of my children is waiting to be assessed for autism and I’ve realised how broad the spectrum is, which surprised me I think.

@coodawoodashooda

What do you wish had been different in your childhood for you?

I wish I was listened to more over sensory stuff. I remember being told I was being awkward and should just get over it of that I was being overly controlling.

If people spent a month in my shoes I doubt they would have that attitude.

I wish my routines and stimming to self regulate were respected and not disrupted or sabotaged. This made me feel very on edge and unsafe.

I wish I had been explicitly told it's ok to be aggressive and selfish if it means keeping safe.

I wish my passions were encouraged as much as my siblings interests. I remember having an egg timer to show how much I had to talk about my SI or people would pretend not to hear me. People would get me presents of things they thought I should like, but I had 0 interest in and were a total waste of money 😂 would of rather just got nothing tbh 😂😂😂

People understanding that peopling takes it out of me and I would go on the sims or read to re charge but then brave going down a bit. Then we went through a phase of total screen bans until like 4pm which just made it really hard to self regulate as I would often be persuaded to go out and play, which seemed totally pointless as they would either play sports or talk about pointless things and do imaginary games that didn't make any sense to me 🤣

I would of loved to of felt that I didn't have to change to be accepted, or mask.

I wish my executive functioning difficulties were understood properly.

I wish PBS/ABA strategies weren't used on me. I had a very open conversation about this post dx and how what was done to me traumatised me and how they thought they were making me less vulnerable as advised to at the time using these strategies but instead the opposite happened. My parents apologised and since that conversation I think they have truly accepted that's how I'm wired and how I lead my life. :)

@LennyMurdoch

Do you have children OP?

Nope, no interest in that department at all. If it was completely painless to donate my eggs and non invasive then I would whip it all out and give it to someone that could put it to some use 🤣

@dizzydizzydizzy

I'm considering asking my GP to start the process of diagnosis.

Can I compare notes with you? Is that ok?

Do you struggle to recognise and understand facial expressions?
What about emojis? I had to get a friend to explain what each one means.
Do you find it hard to memorizethe steps or moves for a dance? I can manage 2 or 3 on a good day.
On the other hand I can memorize number plates and phone numbers without trying because I always see a pattern in them.

Sure!

Good luck!!

Emojis wise, I'm perplexed by some and get mates to figure them out and explain them 🤣🤣🤣🤣

@dizzydizzydizzy

I'm considering asking my GP to start the process of diagnosis.

Can I compare notes with you? Is that ok?

Do you struggle to recognise and understand facial expressions?
What about emojis? I had to get a friend to explain what each one means.
Do you find it hard to memorizethe steps or moves for a dance? I can manage 2 or 3 on a good day.
On the other hand I can memorize number plates and phone numbers without trying because I always see a pattern in them.

I'm RUBBISH at dancing. I can memorise vats of info if I'm interested (photographic) but don't get to choose what goes in.

Facial expressions can be hard sometimes and I often read people as angry when they say they aren't

@Dahliadelight

Hi OP,

What I’m interested in and I’d be glad to hear your view, is do you feel the term autistic is too broad? And by that I mean, there are autistic people who have jobs, mortgages, families etc and autistic people who are non verbal, can’t live independently etc. Would some sub groups be helpful? One of my children is waiting to be assessed for autism and I’ve realised how broad the spectrum is, which surprised me I think.

Short answer - nope.

I find the gate keeping and disability olympics quite sad tbh.

Functioning is fluid - This seems to be hard for people to grasp.

My functioning changes depending on my environment.

On one hand, I could be considered "high functioning"

As I am semi verbal
I have gone to uni
I run my own business

I'm low functioning

When I'm screaming and rocking in meltdown

When I lose the ability to speak, read or control my body in meltdown/shutdowns

I have roughly 30 odd hours of care per week.

I can't do normal adult stuff.

I need people to speak for me when not doing stuff SI related or with close family/friends

I overtly stim

I have assistance dogs

I don't think it's too broad at all.

One of my best friends is almost a full time aac user and overtly carries comma cards - mine are stored in my dogs vest in an emergency.

She can drive, I can't.

She's recently got accepted to do a PHD.

Hi OP,

This is interesting, thanks. I've never come across a satisfactory explanation as to the difference between an autistic meltdown and a neurotypical person being stressed and overwhelmed. Any insight?

@StandsForComfort

Hi OP,

This is interesting, thanks. I've never come across a satisfactory explanation as to the difference between an autistic meltdown and a neurotypical person being stressed and overwhelmed. Any insight?

An autistic meltdown is a medical event and have no control in one.

You also have meltdown hangovers.

@Amazingblossoms

Thank you OP.

I'd say we try our best not to change him, in fact we're currently in a battle with his school who aren't giving him the right support because they don't see that it's their job to accommodate him not the other way around!

Move school.

(Parent of autistic child who should not have been in his primary looking back. )

Whilst I wait for more questions, I thought I would share some videos that you might find useful, although they may spark some uncomfortable feelings...