Why am I the one with the disability?

[Jellybellybeans]

I went to a theme park yesterday for my birthday treat. It was quite busy but I put my brave face on and tried to enjoy it. The queue's were a nightmare. Not time wise, the waiting time wasn't so bad. But everyone squeezing on top of each other.

I can't deal with it. It doesn't get you on the ride any faster. I kept asking the people behind me to give me a bit of space. I told them I was autistic and can't cope with them breathing down my neck. Were they understanding? Were they fuck. Responses ranged from eye rolling, to tutting, to 'well if you don't like clear off'. The final straw was one bloke who kept bumping into me as he chatted to his mates. I feel myself heading for meltdown so push my way back out of the queue to get away. That didn't go down well either.

Then a kind member of staff advises me to go get an exit pass so I can avoid the queues. Great idea. Except now I have to deal with snarky comments because I'm 'jumping the queue'.

In the end it all gets too much so I call it a day and go home. I saw me occupational therapist today and she's talking about how it's common for people with autism to struggle with days out like this. It's part of the disability.

AIBU to be think, in which case my disability isn't me, it's other people and their failings?

Andrewofgg - I think you are exactly right, understanding gives you patience. In my experience I wouldn't get annoyed at a young child's comments, although I would if the parents joined in. Fortunately due to my DDs ASD she often doesn't notice people's reactions to her (a blessing and a curse). On the odd occasions she does we try and turn it into a positive to highlight that other people don't know the same information you do, as she struggles with this concept. So we explain they don't know why you do this or that.

I am in no way a saint and I do find myself inwardly irritated by some things but I have experienced enough and shared so many experiences now I can usually make myself step back and look at thing objectively, however we all get irritated at times. Much in the same way I think you do.

jelly I get exactly where you are coming from. I have AS but for the most part I get by so long as people are willing to talk and explain stuff to me.

If I offend you (generic you) or upset you, tell me, explain why, and I'll make sure I don't do it again in future. However, going all PA or sulking and refusing to speak to me won't do any good because I don't know what I've done wrong. Like jelly I was most likely completely unaware of the existence of a rule, or didn't realise it applied to me/this situation.

If I'm upset, I'll tell you. If you're upset, you try to hide it, or deny it, or just start acting unpredictably. Yet I'm the one with a social communication disorder? I'm communicating just fine, thanks!

DS1 is nearly four, autistic, but very, very high functioning. He does well in busy places (after lots of occupational therapy) but bottlenecks cause him to start bashing into other people. I have become much more aware of disabilities because of my son, and try to educate my wider family about autism. They still perceive autism as Rainman, and my loving, funny, quite sociable son is as far from that as I am.

To be honest, it sounds like your sister is a bit of an arse who purposefully set you up for a fall at her wedding so she could complain about you. I don't believe for a second that anyone who grew up with you wasn't aware that you wouldn't understand the implicit (or otherwise) opaque dress code for her wedding.

If she were a decent person, she would have either (a) helped to organise your clothes for her wedding (so that you could be comfortable and still 'fit in' or (b) not cared about what you were wearing at all, because she knows you don't care about clothes beyond comfort and function. It's very sad that your mum didn't help you out either.

jelly

I think i am little bit in love with you.

Your logic on wedding and interview outfits is flawless. I am (supposedly) NT but I struggle with the concept of dressing smartly and you have just articulated exactly what I think.

Your sister is a twat.

I am well known in my social circle for odd/ inappropriate outfit choice and my family and friends pretty much always specify what they want me to wear. Mum invited me to a birthday tea a few weeks ago and specifically said ' wear the dress with the green flowers that your aunt bought you'

I still don't see the fucking point of putting on expensive uncomfortable cloths in order to sit down and eat with people you see daily. But I visualise it like chess, there are rules they are unfathomable, arbitrary and pointless but if I want to play the game I have to stick to them otherwise people get pissed off. I function as an adult now by memorising the 'rules'

I would rather live in a world run by people who think like you. :)

Sadly op your family don't sound supportive or understanding, as others have said, twats.
In my family we support, respect and celebrate my cousin and treat him as an individual and his needs are of great importance to us.
Sadly, this is not always the case for others on the spectrum.

OP, I can see exactly where you're coming from. My sister is autistic and my almost three year old is currently going through the diagnostic process.

But even before I knew as much as I do now about ASD, I would have been far more understanding than the people at the theme park, many people on this thread and your sister (who really, really should know better!).

My best friend suffers from anxiety and knowing what I know these days I'm pretty sure she's on the spectrum. She's also overweight and is very self conscious. When I got married I told her to wear whatever she was comfortable in but she wouldn't believe I wouldn't be pissed off. I kept telling her I wouldn't care if she turned up in jeans but she went and bought a dress (she NEVER wears dresses).

It was a very small wedding with just our closest friends and family (14 guests in total) but despite this I told my friend to bring her mum (who I hardly know) because I knew it would calm her down and help her cope. Likewise, we had a guy I'd never met there because DH's best man suffers from anxiety and having this friend come with him helped.

In my mind, it was more important to have the people I wanted at the wedding and have them as comfortable and happy as possible than to become a bitch just because it's apparently sociably acceptable to be one on your wedding day.

Then again, as much as I'm 'NT' ASD certainly runs in the family and I think I'm certainly leaning towards the spectrum!

Andrew - I can see how teaching children to queue when they see adults "queue jumping" may be difficult but these SN adults cannot enjoy their day out otherwise and have as much right as you to use the facility. Maybe how to explain it is something to think about in advance .

BTW - Do you get similar problems with children refusing to move on from the buggy after seeing an adult in a pram wheelchair or with them not understanding why they can't take their pets into a restaurant after seeing a guide dog there? How do you handle those situations and are hidden disabilities massively different?

I'm not really understanding the 'but what do you say to a child who sees some one else go in a faster queue'

It's not complicated is it - or are there hoards of pedantic, logical and argumentative children out there?

When my 10 year old could do something that my 4 year old DD and her peers couldn't do I just said 'Pagboy is slightly different from you. He finds some things much harder than you so we are kind and let him do x because otherwise he couldn't do it at all'

I've never met a child yet who whined. The most common response other than 'ok' was an interest in DS2 and his different things.

Sadly sometimes for Pagboy they would then want to dress him up or make him play. Tragic. The times they tried to do his hair were the worst .

Kids are rarely the problem. Selfish and /or aggressive adults are always the worst.

Kids are rarely the problem. Selfish and /or aggressive adults are always the worst.

Reminds me of being on a busy tube one day, there were two empty seats opposite me and a young girl (9ish) ran down the carriage, sat on one and tried to put her hand on the other to save for her mum but a woman with her arm in a full pot sat in it as she was in front of the mother. The girl said 'I tried to save it for you' and the mum looked down her nose and tutted towards the woman who said nicely but wearily, 'actually you do have to give up seats for disabled people'.

The mum and girl exchanged looks and the girl said fairly innocently 'but she isn't in a wheelchair'. And the mum said......'I know' and pursed her lips.

I was so shocked all I could say was 'you have got to be kidding me' and stare at them with my mouth open. I was getting off at the next stop, didn't have time to regain my composure and say something more intelligent, it was a bit of a missed opportunity.

By the way OP I love the sound of that tracksuit! And the employer who recognised your ability to do the job regardless of how you cope with the interview game which is soooo not geared towards people on the spectrum. We need a bit more of that in this day and age.

Just caught up with the thread.

I LOVE the idea of attending a job interview in a yellow cat tracksuit. That is brilliant.

OP I don't think you should ever change for anyone. Stay exactly as you are.

And be mindful of not blaming yourself or your disability for the fact that you don't see your mum or your sister very much.

I suspect the real reason you don't get on with them is because you're a nice person and they're not very nice people.

Hi Jelly,
The clothes thing -- DS describes his clothes choice as 'going undercover' in the NT world. The rules on "what to wear, when" are pretty baffling to him, but thinking of it as stealthy camouflage in a world of suits/hoodies/jeans means he usually gets it right-ish these days.

I'm guessing that it's permanently like trying to guess the dress rules for a foreign country but always being obviously the English person abroad?

For years I dressed like "bag lady" according to a colleague.

I now dress NT but always feel like a fraud really. I've also done courses on make up and I just get my hairdresser to advise me on what to do with my hair. I even went on a flirting course when I realised I wasn't asexual!

Constructing an NT façade to fit in is really exhausting though every so often I have to retreat or crash and burn.

Just to start with, i am mid-way through the diagnostic process, not officially asd

My 'normal' clothes are my costume, like putting on a show. I've had normalness drilled into me and i'm left constantly terrified i will get it wrong.

I think the show thing is also why i wear make up - i dont in the house and im unbothered by not having it on, but to leave the house i have to give the impression of a normal 20 something female.

I think the show thing is also why i wear make up - Me too, although I sometimes enjoy it as a kind of art project. It's what feminists call performing femininity, and we all do it to one extent or another - unless we are gloriously autistic! Someone upthread referred to social miscommunication in ASDs. As I understand things, it's about the whole spectrum of social communication: not just words, but all the non-verbal stuff; the unwritten rules; the expected performance. It's perfectly logical to go "What's all that about, then? Why bother?" And this logic is what marks the difference between NT and not.

I'm just talking about social communication here; I know there are more profound differences of inner experience.