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?

[ouryve]

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.

[ouryve]

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."

[AwaywiththePixies27]

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.

[JefferysJodpers]

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

[JefferysJodpers]

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

[TheFirstMrsDV]

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.

[RebelRogue]

Because kids grow out of autism?

[Desperatelyseekinganame]

To go against the grain a little... yes it must be frustrating especially if you have had to fight for a diagnosis. However we do sometimes get these wrong. After all diagnosis is based on observation, interview and best fit to list of criteria. Children change, evolve and grow and maybe if your daughter continues to make progress, it would be worth exploring diagnosis again.

[SafeToCross]

My friends dd was diagnosed at the same age. She did well socially and academically in primary school, and they have tried to take away her EHCP every year, but funnily enough it is the diagnosis and extra support that have helped her do well (and she has struggled whenever the support is reduced).

[Mumoftwoyoungkids]

My brother is allergic to nuts.

In the 80s many people believed that nut allergies were just fussiness. One or two people decided to try and prove it. That was fun.

[Xmasbaby11]

I had, about my dd, from a friend 'at least she'll be great at maths and will get a well paid job at a bank!'

Fucked off! She's 5 and has no interest in numbers, and struggles to count beyond 20.

[Ekphrasis]

YANBU

themighty.com/2016/05/rebecca-burgess-comic-redesigns-the-autism-spectrum/

[TheNoodlesIncident]

I haven't had much experience of this as I have a scary face, but I recall a parent in the infant school playground expressing surprise that ds is autistic. "Oh, it must be very mild!" she exclaimed. I did think of responding "Oh yes, all those hours of 1:1 TA were just a waste of funds for years!" but in the end I categorised it as "thinks she's saying something nice". It's not a comment I would make about another child...

Other parents have said things like "I would never have known" - including parents of children with autism. But that only shows how differently we all present and nothing else.

Hope tomorrow is a better day op

[Mogtheanxiouscat]

My dd copes at school. Just. We see the after effects of the effort that takes once she is home. But she can't be autistic if she isn't disruptive at school

The mild comment is infuriating. So dismissive.

[OneOfTheGrundys]

randoms

[OneOfTheGrundys]

Ah I'm hearing you OP. DS isn't autistic as he makes eye contact, is friendly and is not good at maths.

Except we'd been pleading for a proper assessment for 4 years. And when it finally came... he's at the very top of the diagnostic scale on one of the four categories and well into the ASD zone on the other three.

He's profoundly deaf in one ear too and dyspraxic. Except when the 'experts' ransoms tell me he's not autistic they don't recognise the other two conditions as common co morbidities to ASD.

Like lougle though it's getting more obvious as he gets older. He's not blending in any more and the things he says and does can't be explained away.

[Waitingforsherlock]

www.alexlowery.co.uk/the-myths-of-autism/

[hellokittymania]

Why do people think like that? I can't understand it. I have a visible this disability and other needs, and nobody expected me to be able to do half of what I do. But I do. And people don't understand why Somethings are really hard for me. Or they tell me I should have known things things, or tell me off if I ask for them to explain more because I don't understand. That is the reason I ask for people to explain things, because I didn't know things and I'm trying to learn.,, I also often hear about other friends of mine, well she has this so how can she possibly be in college? University? Working at this job? Haven't they ever heard of that professor with down syndrome? You can do well despite your disability. You can I want to learn despite your disability. You can llive an independent life despite your disability. This is 2017, not 1800.

[TheFirstMrsDV]

future I et it now. I was just a bit confused

That comment is fucking outrageous.

I have the utmost respect for the nursing profession and would have loved to have been a paedatric nurse but unless they have specialised your average paed nurse will not be particularly knowledgeable about autism.
Its not a medical condition so they will only come across if a child with ASD happens to come in with something else.
Unless they work in a CDT.

I have an aunt who has been a nurse for 40 years. She is an expert on Emergency Medicine but knows zero about child development.
Doesn't stop her telling me my business though.

[LittleMisslikestobebythesea]

It's comments like this that made me need to get assessed myself this year as I need that piece of paper confirming it for me,

I've had comments when I've told people like 'you can't be autistic you can make eye contact/have empathy* etc etc

Or at the job centre, oh it's only mild then?

I don't mind that people are shocked, want to ask questions etc, or say they didn't realize as they misunderstand what autism is, but are happy to be filled in, that's fine, I've been open about it.

I just hate that people see fit to judge when they have no fucking idea how hard things are for me sometimes!

DS1 is currently under CAMHS for assessment and I've had comments about him too, it's hard enough as it is, without the negative comments.

I'm lucky to have found a local charity for parents with children with additional needs, so have met plenty of supportive people which really helped!

[WilliowGreen]

FutureChicken I was not offended by your comments at all ( I had to read back to work out what you could possibly have said to offend me).
It is so confusing to me that neurotypical people who supposedly have such superior social skills are so bad at using them.
I love your comments about her spinning round in a puddle😀. That sounds fun.

[RebelRogue]

Just tell them to fuck off. They're stupid and ignorant. They don't want to learn either,if they did they'd listen to you and your experiences rather than telling you and defining what your experience based on...shit.

[RunRabbitRunRabbit]

It's not limited to autism. My DH and his sister have both been told emphatically many times that they can't be dyslexic because they have PhDs and can read. Apparently my DD's dairy intolerance is definitely a fad or my/her imagination, it isn't a real thing. People do seem to accept DS's peanut allergy but with a side order of he will definitely grow out of it, despite what his own specialists say. That said though, when he was 7, someone tried to stop me giving him almonds, refusing to believe that I know which nuts it is safe to give to my own severely allergic child. Gah!

Some people like to tell instead of ask. Boring people. So very very tedious. I get most pissed off by the uptight lordly types who feel entitled to demand that I justify myself to them, like the almond nutjob.

[deeedeee]

The other thing I hate is people saying

"oh his dyspraxia's getting better isn't it?"

to which I say

" yes he is growing up and therefore he's managing to find strategies to do the things that most children did years ago, whilst still struggling with the normal activities of his peers and the emotional fall out "