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?

Because kids grow out of autism?

Desperately children do indeed grow and change (although I am pretty sure they don't evolve), even autistic children develop.
They don't stay stuck as a 3 year old.
Even very severely autistic children can gain skills and they all develop physically.
The '20 year old with the mind of a 5 year old' is a misleading and outdated way of describing individuals with learning and developmental disabilities.

When my son with ASD was a baby he didn't talk. He has a wide vocabulary now.
When my children without ASD were babies they didn't talk. They also have wide vocabularies now.

They call all walk as well. A miracle if you consider none of them could for at least the first year of their life.

Children may be diagnosed as 'severely' autistic when very young and as they grow, with the right input and with support from their parents, it may be that they are on a different part of the spectrum than first thought.

But if you are interested my son was dx twice with ASD.
The first at about 7 and then at 13.

I had internalised all of the years of 'he looks alright to me' and 'oh they say everyone has autism now!' and 'parents always looking for excuses' and asked for a reassessment. He was at transition so we were able to get one.

Guess what?
STILL autistic.

I think progress is to be exprected, as far as I can see she has autism but no significant learning difficulties so why would she stay the same? I'd go further and say she's bright, but as dh summed up her communication ability is years behind and limits her.

At nearly 36 months her receptive language was 12 months but her visual skills 48 months.... that gap has held.

I actually resisted diagnosis to the point of refusing home visits at first and was really pushed by a CDC nurse. It's not been any fight as people oft perceive, it took shit loads of time to accept and a9 week CAMHS course to even begin

Personally one of my biggest reasons for acceptance was to escape the limbo of differences without an answer. I've learnt autism strategies work for her to help her grow, that it help she me understand her, it's excellent short hand to communicate how she'll be with others. It fits and it works. If it look s like a duck...

Asking to re-assess and always trying to decide isn't a way to move forward at all. Saying she isn't isn't suddenly going to remove her difficulties. I really can't see the value in 're-exploring' it all formally as it isn't going to change the reality. Label or no label, she cannot do many things her peers can do, she's pretty vulnerable and she isn't going to be able to suddenly drop it all just because people think she should

Solidarity. I've had them all as DS is HF.

I had a paediatrician tell me "DS can't be autistic - he talks to me okay". bear in mind that comment came from an 'EXPERT'

OP.

I'm so glad that I've never met people like your social contact (glad you didn't call the ignorant and quite offensive cow a friend)

My non-verbal 3 year old is now an 11 year old who never bloody shuts up!

I'm rather concerned that someone so ignorant is a paediatric nurse. That said, the GP (thankfully now retired) at our local practice who was supposed to have a specialism in paediatrics couldn't understand why I wanted non-sedative antihistamines to treat hayfever in my DS with ASD and, at the time, extremely hyperactive ADHD. He was bouncing all over my lap and lunging for interesting stuff on the desk and the GP said "well, he needs a sedative."

then suddenly, at about 8-9 years old I realised that people were a bit more understanding. Now, at 10 years old, I very rarely have to say 'she has SN...it's just obvious.

Yes, though I've noticed that the reactions that DS2 gets range from head tilting to recoiling in horror when he jumps and vocalises. He got us a table to ourselves on a busy bus, recently, though :o

DS1 is less obvious. He's man sized with a deep voice, though is selectively mute and speaks to very few people (he couldn't even speak to me in front of my own parents, who he loves, recently). He walks around with his phone under his nose - either PoGo-ing or angling for a photo of a bus - and just gets treated like a rude teen. Sometimes, he's walking ahead of me and people are actively facing him off or tutting at him because he lacks pretty much any social awareness and his body language is either oblivious or defensive. he's not jumping or vocalising or drooling like his brother, though, so lacks the obvious markers of someone deserving of a head tilt.