High-functioning autism isn't a disability?

[EnterWittyNicknameHere]

Hello everyone. This is my first post (new member!) so hope i'm doing it right...

My daughter attends a language unit nursery, and will be receiving 2 hours per week of additional support when she starts mainstream school this year. She was officially diagnosed with ASD last year as being on the high-functioning end of the spectrum. But even with this diagnosis, my friends and family still don't believe it! They think i'm wrong to have 'forced a label on her' and believe high-functioning autism isn't a real disability - just a way to label kids who are a bit 'quirky'.

I have a friend whose son has ASD (he has a more severe case of it though) so of course my friends are going to make comparisons between this boy and my daughter. But i feel like i'm talking to a brick wall when i tell them that autism is a spectrum disorder. It affects each individual differently.

To me, my daughter's autism is clear, but because she has an imagination, can talk, can play, is well-behaved, rarely tantrums etc - people don't believe she has it! I think it's terrible that people only believe someone has autism if they're non-verbal and are violent.

It's got to the stage where i can't even talk to friends/family about my daughter and her ASD-related problems, as they just dismiss them with 'Oh, all children are like that', or 'Oh, she'll grow out of it.' And when i reply, 'No, you can't grow out of autism', they go silent and give a funny look as if to say, 'She doesn't have autism though.'

Aaaaaaarggggghhhhh! Does anyone else feel like this? She has a diagnosis for goodness sake, what further proof do they need?

Oh yes totally agree. My MIL (a nurse!!) refuses to accept that DS has ASD - in her eyes I am not disciplining him enough to make him comply. Her solution to his autism is to smack him

oh yes, DD is 5yrs old and is dx ASD

i'm looking for a new school for her for sept as the SENCO thinks that because she seems to cope IN SCHOOL that we've managed to convice the team of 2 psychs, SALT and OT when there's nothing 'wrong' with DD

i find making comparisons to the negative with another DC with the same dx is most hurtful.

i don't want anyone to make any comments tbh, just to accept and try to understand.

i've only just made the autism and Forrest Gump connection

wow - just that

but yes, it leads back to (i think) Pagwatch's thread about our DCs having a special talent as all autistics have one to make up for their shortcomings - as this obviously cancels out any disability

i have zzzzz

she's using all the 'buzz words' and describes her DC's behaviour with jargon and cliches. i just can't see the issues in the same way she does, yet with another DC i know, i 'see' traits that the parents are blissfully unaware of.

i keep well away from commenting on either - it's painful and yes, a huge internal conflict.

I have exactly the same with my family, my mother thinks I am too soft and regularly says "Well she is just going to have to.....!!"

My sister was dead set against me going for a DX she didnt believe that Dd3 has ASD, since we got the DX she has been getting better at supporting me and has admitted that her Dd1 is probably on the spectrum too, which I agree with.

Many people dont believe that Dd3 has ASD. her old school were absolutely hopeless and completely failed to support her in any way.

I moved her just over a year ago and now she is brilliantly supported, the SENCO is fab and all the staff listen to her, this means Dd3 is much more relaxed and able to be herself at school.

Sadly you either have to grow a thick skin and ignore the stupid comments or attempt to educate people around you but that could take a long time.

good luck

Tbh it's heart-breaking either way. On one hand (at the early stages) you want people to tell you you're imagining it, all children do that, etc.

Then, when your child has been dx and you're coming to accept it, you want others to realise how hard you and your child's life can be and bloody well help with it in any way they can or is that just me

What I would find most help atm (but am not getting in any way, from anyone except our ABA tutors who are proper experts and interested) is people recognising how goddamn gorgeous, clever, and awesome my ds is and how hard he is working to make incredible progress.

Worst thing is feeling that people are only interested because they find a 'disability' and especially autism, a curiousity and want to know more - not because they are actually interested in him or how to help.

Like I've just started to 'come out' a bit at school (ds in ms Reception) to some of the other mums, who would not have realised before. The most common reaction I have had so far (after "I would never have known") is "how does it manifest itself". When I start to properly answer, they glaze over as it's all a bit mundane really. What they really wanted to hear is juicy stuff like he sits and rocks and flicks his fingers all day and doesn't engage with anyone.

Maybe I'm being uncharitable or oversensitive

I wonder what is I want people to say? I think it is: appreciate his strengths but not belittle the difficulties, or imply it is down to your bad parenting skills...

Ds2 has a habit of going up to mums/teachers in the playground and hugging them or trying to dance with them. Now I want them just to make clear to him that this is inappropriate, rather than jollying him along. I think they feel embarrassed, as if they should somehow put up with it. But they can politely re-direct him, engage him a different way. A lot of people don't know the best way to handle autistic behaviours, they either overdo positive reactions or are too negative.
The best response I ever got was a woman who when ds spat on her door, just calmly handed him some windolene and a duster and asked him to clean it. (she was a special needs TA in RL, and it showed

Again, dd has a friend with a mum who always tries to include ds 2 in everything, sometimes making things worse by inviting him to things that he is going to find impossible like discos. (And then he gets upset because he wants to go, and upset when he does go, against my better judgement)

People who value ds2 as a person, take account of his ASD vulnerabilities, but don't put him in a box of "asd characteristics".

yeah, "What would help?" is low on most people's lists.

Despite a lot of prompting, people don't invite ds2 round to play (except for one kind person who has terrible health problems to contend with, and I think understands what it is like being excluded).
So what would help ds to feel included would be for someone (anyone) to invite him over, for a short play, it wouldn't have to be long.
Boys his age have come for playdates, it has been fine, but there is no reciprocation. Occasional party invites.
Yet people will listen sympathetically to you telling them that ds loves to be included, or tell you you are being over protective without somehow the penny dropping that they could include him in a very simple and productive way. By inviting him around for an hour. He would behave brilliantly.

In fairness though, I am often guilty of expecting too little of people. I'm starting to learn that if I'm very clear about simple things, a lot of other mums, ikea creche ladies, shop assistants are quite happy to do them. A silly example, "my son has SN, would you mind hanging on to the crisps till he looks at you and says please"

This might be useful for some of you.

Silk