To be getting fed up and angry with the 'she's not autistic' brigade??

[FutureChicken]

WE went a rough time a few years back when dd was 3 and she was diagnosed autistic. Non verbal and angry child, looked like everyone's steroyyype of autism.

Fast forward and she's done so well on behaviour and learning and we are delighted. However she still struggles and we work so hard to support her to be her best. Still some things are hard, but we're in a way better place.

Some people who've heard now go out their way to acost me to tell me she therefore can't be autistic. Reasons this week:

-she can now answer a simple question or two with one word answers

• she has a personality, she's not (mimic duh face here)
• autistic children are babies forever

-autistic children don't have personalities / think

• I just heard her talk

-she can count to five now (at five, with prompting) -she's not aggressive (unless distressed she is pretty calm)

• she's just shy/ sensitive, anyone can see that

I spent ages coming to terms with it, did support groups etc to understand and get to where we are. The last thing I bloody need is people persistently telling me she isn't to try and go back to the crappy limbo stage and also end up being drawn into rehashing difficulties.

She can talk to adults yes, but she struggles with peers. Yes she talks, but like a child years younger which makes reception hard. She hurts herself. She doesn't sleep. Noise scares her. She has trouble with food/ toiletting. She runs in ththe road if not held onto at times. She gets focused on spinning and things in public and attracts attention... I could go on.

Aibu to ask people to stop and think before they do this? Fair enough if you're asked a question, but I can't understand why some people return to it over and over to discuss and disagree with a diagnosis that was a bloody long process to go through?

what don't you understand mrsdv?

The nurse is a social contact who works locally. She's clearly bothered by the diagnosis and spoke to a doctor at work. She said he said children with autism are babies forever/ don't ever develop personalities. She mimed a duh face to demonstrate. She said quite a lot, but that's a flavour

I had this with DS2 for so long. What most people dont understand s the sheer effort it takes for people with autism to pass as normal. As YouTheCat said, most people dont know, and if they don't want to learn they are twats.

I get the same with my children, who are dyspraxic.

DS has been seen by a neurologist since he was two years old, we had a couple of years of scary tests ruling out degenerative conditions before he was eventually diagnosed at 4. At 8 he is a lovely funny little boy with much charm, humour, spirit and tenacity. But he can't yet read or right, still needs full support to dress, use the toilet etc, uses a wheelchair on bad days, has daily meltdowns.

But was told recently apparently "he's just a bit clumsy, most children are"

TBH we have so little professional contact I have reports on 'bad days' with write ups that are very low functioning to the odd one that report she smiled and therefore was amazing. Never seeing the same people plus going to a number of different clinics makes even the reports erratic

Deeedeee, I would personally be great at clipping ankles with the wheelchair....

I find I'm usually just too much in shock at what I'm hearing to respond in any meaningful way

If it's any consolation things are getting better a few years ago ignorance among professionals was the norm not the exception.

When I was applying to uni I needed a report from the education psychologist to say I had autism. My school asked him to see me to write the report. He refused to even meet me as someone with autism would not be capable of going to university, so I couldn't possibly be autistic. I am now a lecturer.

The most ignorant and infuriating people are the ones who think they know about something because they are 'professionals'.

Having said that awareness has gone up dramatically in the last few years and I think it is only going to grow.

Your little girl sounds amazing. You must be so proud of how far she has come.

I can't think of anything you can say in response to someone like that because I have not learned how to deal with these people either. Fuck off is probably as good a response as any.

I have this too! Mine is 3 and people just look at you incredulously like you are making it up, OR, they imply that you have been somehow sucked into believing she is ASD by some quack....

I just re-iterate the point and then ignore it. It does make me not want to see some people though (inclu family).

It's so limiting though isn't it zzzz, generating a big list of not friends.

Recently another mum whose two yr old is now going through the process messaged me about how dd is just shy/ introverted unlike her difficult ds (she didn't know us when dd was a nightmare non sleeping face hurting toddler). It hurt tbh more, realising that a contact from an Sen group felt like that. It put me off the group as I felt less comfortable going there either, just like other groups. Ironically her ds is way ahead at the same age in a lot of ways,still obviously having difficulty and it doesn't diminish her struggle, but it shocked me.

Hfa is hard to find a space for

Willow- I am massively proud

(I hope I don't offend with the hfa comment, I don't mean it's easier for anyone else! It's just tricky in its own right, not in comparison)

Do you know what also makes me mad? People who dismiss it in a 'oh, well we are all on the spectrum'....

Sorry, rant over.

OP I rarely swear so I don't say this lightly however I agree with other posters that "Fuck off you muppet" is a perfectly acceptable response to the terminally ignorant.

My niece has autism and my sister has to endure this all the time (annoyingly and all too often from family & friends that should know better).

not all paediatric nurses are authorities on autism. by the sound of it this nurse isnt an authority.

My daughter is a teenager now. It bothers me less, it used to infuriate me when she was younger. I have had gems such as 'she hasn't got autism because she can talk' she has a touch of autism' whatever the fuck that means and the old classic 'she doesn't look autistic'

She is actually very fucking autistic thank you very much and its more about ignorance and pre-concieved, inaccurate ideas of what autism is thats the issue here.

It becomes water off a ducks back. It SHOULDNT obviously but it does. Ignore it and carry on

What gets me more zzzz I think is the gas lighting aspect, rather than hurtful.

I picked up ds from swimming. Dd danced on her toes and covered her ears, span in a circle on her bum in a puddle then walked in around 15 big circles clicking her tongue loudly before manically giggling whilst rubbing her cheek up and down tiles. Great she was so happy and exuberant but I was bemused when a school mum came over to say how well dd was doing and she wasn't struggling like she used to. (Same one who mentions it a lot about not being autistic). I think if her dd was acting the same way she'd have issue...:

I understand. Autism, like many other disabilities is a spectrum and it affects people in different ways. Saying that your DC can't be autistic because she talks is like me telling my friend that she can't be Polish because she can speak English.

I hate this kind of thing. I have disabled DC and I get it a lot. Ds2 is starting to notice and get angry about it too.

Tell em to fuck off. They sound like ignorant twats. Next time someone says something smile at them patronisingly and go thats nice dear. Or tell them to research autism before sprouting off about it with ill educated views as ignorance isnt an attractive trait. Theyll sharp shut up

My best mate growing up was autistic. She didn't even know until she was 13 and was told by someone else in our class after our teacher told us all

Noone would ever have known tbh...and we saw her everyday. Only tells were she did not get sarcasm at all. This was how the class ended up being told actually...teacher said something about 'ah the penny has finally dropped' and she started looking round the class for a penny on the floor...then got very distressed and ran out of the class, art which point the teacher said 'oh that'l just be her Aspergers'

Fucking dickhead. Her mother was furious. Both that he said that infront of a load of teenagers and that he has been so dismissive with the 'just'. As it happens, she was picked on by people after this too. Not sure if it was because people found out about the autism or just something that would have happened anyway with the whole penny thing.

So yeah, can't believe we still don't seem to be past the days where it was a common belief that if someone didn't look like they had a disability, they didn't have one.

*Only tells were she did not get sarcasm at all and she didn't like being in crowded places at all and sometimes got quite distressed...but even that isn't specific to those with disabilities.

Apparently my children are not autistic, I just talked too much to them when they were babies , thanks for that information MUM.

My stock response to people saying my ds doesn't look autistic is

"Here's the number for Camhs who diagnosed him. Give them a call I'm sure they'll live to hear how your expertise disputes their diagnosis"