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?

Argh it's frustrating! I have HFA, was diagnosed 18 months ago (as an adult). I'm definitely not a baby!! I do sometimes feel like I've never reached proper adulthood though I am university educated though, hold down a good job, have a family.

I think depending on my mood would vary my response. I think if I was feeling generous I would try to educate That's not accurate, let me explain. If I was sarky, I'd say something along the lines of Oh, when did you get a qualification in Autism studies? I get your frustration! It does sound like you're doing an amazing job with your DD, supporting her to blossom whilst letting her be who she is, so keep persevering regardless of the undermining twats

The consultant paediatrician that diagnosed (after 2 years of utter nonsense) my ds (non-verbal, violent, virtually no communication at all) gave an official diagnosis of 'mild autism' because we pressed for a label and wouldn't leave the cow alone . She even expressed that she didn't believe in autism. This was 18 years ago.

The doctor that referred my dd for assessment (dd requested this) told her that she couldn't be on the spectrum because she was doing A levels. This was 5 years ago.

Sometimes I despair.

It's a bit sad, but give it until she's 10 and you won't have to convince people anymore, or at least, that's been my experience. I went through the toddler with SN stage (awful, lots of 'loud parenting' needed to point out that it was SN and not just tantrumming), the young child with SN stage (lots of people thinking that she was a naughty brat....the Crelling harness and the Blue Badge helped to prove that it was SN), the slightly older child with SN....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.

We also have 3 with autism..... All totally different..so they can't ALL be autistic...

It's never ending...

You have my sympathy. I have an adult cousin who has recently been diagnosed with a genetic condition - until now he was though to be 'just' brain damaged. However he's always looked a little different (don't know how to describe it better), and his gait is unusual - I'm sure that makes his life much easier because people will assume he's disabled before he speaks to him (his speech is pretty good, but he doesn't have the social skills of a NT adult). So they are pleasantly surprised by his abilities rather than struggling to accept he's different. Looking 'normal' if on the small side must make things even more difficult for your DD.

I feel for you. It's infuriating, people really do speak when they don't have a clue.

Recently I read about another mum in a similar situation who responds to these comments with a thank you.

She says; thank you, all our work and the professional intervention to help him/her cope and be more resilient is paying off. Thank you for your encouragement that we are doing the right thing.

That stops the person in their tracks in a polite way. It also reaffirms that you are doing and continue to do a great job.

Lougle, my sister was a little like that in the sense it became more obvious. A sweet passive child who generally smiled and blended in as the world passed by. As the demands grew her ability to meet them lessened. I sometimes look at dd and remember my sisters smile and innocence.

Finally in her mid twenties for my sister it's coming together again, she's got supported accommodation and has met a sweet man. Their needs cross in a way that they can support each other

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 "

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.

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.

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.

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!

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.

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.

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

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.

randoms

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.

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

YANBU

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

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.

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.

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).

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.