To think it’s really hard for autistic children at the moment

[Scottishmum1984]

This really struck a chord with me as my friend’s son is struggling at the moment. www.edinburghlive.co.uk/news/edinburgh-news/edinburgh-mum-shares-heartbreaking-reality-19325731?utm_source=linkCopy&utm_medium=social&utm_campaign=sharebar

My son too ,he's not a clue he has autism and severe learning disabilities ,I am his advocate because he's non verbal and can't speak for himself .

I think there is so many issue with the neurodiversity movement... it really pushes those at the low functioning end to the side and drowns the out as they have no voice.

But I think this is a bigg r issue as diagnostic criteria became wider and wider over the years. 'Autism' now covers actually a multitude of conditions which don't have very much common ground.

E.g. Greta of autism superpower fame has nothing, absolutely nothing in common with someone being nonverbal and needing lifelong 24/7 care.

I am completely reject the idea that one groups can speak for the other and I cannot understand for my life why so many disagree. These have nothing in common. Nothing at all.

Exactly in fact sometimes i wish they would take away my son's autism diagnosis ,it is not at all helpful when discussing his very complex disabilities.

I also agree with dairyfairies, my son sounds very similar.

In real life I very rarely use the word autism in connection with DS, it provides the receiver with no useful information. His severe learning and behavioural difficulties fit him better and remove the anecdotal conversations that come with Autism. Whilst his paediatrician would not remove the ASD diagnosis, he has lowered it in his description list of disabilities.

Yes, changing the diagnoses to ASD to cover all types of autism conditions has caused a lot of damage to autism awareness.

@dairyfairies see I completely disagree. High functioning autisitics struggle to get even basic recognition or support. I struggled through school until I was old enough to get my diagnosis by myself. Everyone complained about the things I struggled with but I was too smart to be autistic.
So so many "high funtioning" autistics will tell you the same.
We are not one group, we aren't even two groups, we are a whole spectrum of diverse people. Some with autism alone, some with additional developmental or intellectual disabilities.
But parents of autistic nonverbal children so often talk over the verbal autistic people that it makes us unheard and unseen, it means that people only see the children who are non verbal and have autism aswell as other disabilities as what autism looks like. So do not criticise verbal autistics for speaking up about what autism is like for them, just because your child is nonverbal. We need to be seen and understood so that we can hopefully thrive in a neurotypical society. I've never told the parent of an autistic child not to take part in discussions of autism but I'm bloody sick of these parents making out that, what?, we're not real autistics because we are verbal.
Because really the only difference we know that we have is that some of us speak and some don't. But, I do think that verbal autistics have a better understanding of what nonverbal autistics are thinking and feeling than neurotypicals. We are more alike to them than you to us or you to them.

But parents of autistic nonverbal children so often talk over the verbal autistic people that it makes us unheard and unseen

that is not the case at all. It is the other way round as our children cannot talk and therefore don't have a voice. The media is full of those who are high functioning telling the general public about Asd. those with LF Asd (I know I am oversimplifying when talking HF/LF) cannot do this.

Whenever I mention to someone that DD has autism, they assume she is some kind of highly gifted math or computer crack simply become of the massive overrepresentation of this who are at the much more able end of the spectrum.

I never said you are not a 'real' autistic. All I said is that I don't think you can and should advocate for those at the severe end... that is not your life experience. You have no idea what it takes to look 24/7 after someone with severe LD Asd and what it is like to do that every day of the year often die decades . Advocating for those should be the remit of carers who look day on and day out after those with severe support needs not this who 'think' they understand even though they have completely different needs (I am not saying you do not have support needs).

But, I do think that verbal autistics have a better understanding of what nonverbal autistics are thinking and feeling than neurotypicals. We are more alike to them than you to us or you to them.

I completely disagree. How many severely non-verbal autistics do you care for? If not how could you possibly say you have a better understanding than those who care for them 24/7. How offensive is that?

@DumplingsAndStew

Yes, changing the diagnoses to ASD to cover all types of autism conditions has caused a lot of damage to autism awareness.

Absolutely, we needed more categories not less. It's like lumping all non white people into BAME. Or the whole LGBTQ+ or whatever they call it now. It's less descriptive and informative.

And this thread is turning into an argument that always happens on here, on Twitter and all over social media. It is such a shame because it is so hard to get the right support whatever the diagnosis...autistic people, people with Learning Disabilities, people with complex needs etc, and their carers and advocates.... all asking for the chance to have their 'voice' heard, for people to listen...and there is no one size fits all, no 'one right way'....but everyone deserves a place at the table and a way of enabling that.

Ds, with complex needs, had no diagnosis of anything for years - his needs were obvious to everyone, but we have had to fight hard for every scrap of support, from school, medical professionals, therapists...everyone.

But, I do think that verbal autistics have a better understanding of what nonverbal autistics are thinking and feeling than neurotypicals.

Don’t agree with this at all. I haven’t a clue what it’s like to be non verbal or how that makes a person think or feel about anything. That person’s neurotypical parent would know the ins and outs of their entire life in comparison.

I don’t think parents of autistic people should override to voices of verbal autistic people but verbal autistic people should recognise that parents can speak up for their children on their behalf. I think verbal autistic people do lump a lot of parents in with the militant autism mummies and that’s not fair.

@dairyfairies you know your daughter better than I do. Put us both in a room with your child having a meltdown, you can calm her faster than me, you know her triggers and her comforts. But you will never experience a fraction of what she does, you cant know what it feels like, I know many parents of autistic children, I have never met one that understands what sensory overload feels like, and I explain it best I can in terms of experiences that you have that feel similar to what I feel, but that's still through my lense it's still, I feel like this in this situation, I think you feel the same, well that feels like how I feel in this other situation, where you dont feel the same.

You know how it affects you, you know how it changes her behaviour and therefore how it impacts your life. But just as a parent of an epileptic doesn't know what an epileptic seizure feels like, you dont know what a meltdown feels like, you can't, you've never experienced one.
Most verbal autistics I know identify more with your daughter than they do to you. And more parents of autistics identify with you that me. They know what it's like to be the parent of an autistic. We know what's like to be autistic, yes to different extremes, but we've felt what your daughter does, you physically cant. Like your husband will never know what childbirth feels like.

And the reason autistics are now so vocal is that we are trying to overturn peoples opinions that autism is the particular image of either a non verbal child or an unruly child. So that children like us can get the support they need when they need it, so that no other child has to feel like a freak their whole life until they read something and go "oh fuck, I'm autistic!" And so that we can actually put autism on job applications, instead of having to hide it because no one thinks we're capable of anything.

And the maths genius things pisses everyone off, it give autistics unrealistic expectations of themselves and makes them feel shit if they didn't get a "special talent" with their autism.

We still see the OT.

High functioning autisitics struggle to get even basic recognition or support

I get this. My so called ‘high functioning’ child struggles because he’s not ‘bad’ enough to warrant support. He hasn’t got a learning disability so he goes to a mainstream school where he bobs along. He doesn’t have an education plan because school don’t think he needs one, he has no classroom support, no 1-1, he bubbles below the surface and is massively struggling. We then have the meltdowns at home because he’s masked all day and isn’t coping. I don’t think his teacher this year even realised he was autistic. He is being hugely let down and I am fighting tooth and nail for him. He may be high functioning but what does that mean? He has no social cues, is very literal and struggles with friendships and spends his day trying to adapt to a NT world.

It's absolutely hard. They thrive on routine, and this is a time where none of us can even begin to predict what life is going to like weeks, months or even a year from now.

It's so horrible, and there's little we can do to reassure them as we're none the wiser, and can't risk making a promise that gets broken.

I'm gonna leave this now as, as @HazeyJaneII said, autism discussions will always end up like this. None of us are being heard and we're arguing between ourselves. And it can get nasty when people arrive that just criticise autistics as a whole. I dont like it but I also dont like people implying that autistics like me aren't really autistic when they no idea what it's like.

We're all doing our best and obviously all only seeing through our own eyes. All the best to everyone just trying to make it though

And so that we can actually put autism on job applications, instead of having to hide it because no one thinks we're capable of anything.

That is what I mean. You don't get it. You see everything through your HF lense....The like like DD will have to put autism on their application - for residential care.... certainly not for a job application. This is almost ridiculous - only it is not funny.

DD2 doesn't have autism (although sometimes I wonder) but has other SN, sensory issues, high anxiety and copes with it all by having her life structured and knowing what's happening when (like I say - sometimes I wonder).

She completely fell apart during initial lockdown - wouldn't go out of the house as she was scared of anything floating around in the air, couldn't sleep because of too much sad inside her brain, lost half of the progress in speech therapy, and would just randomly burst into tears and spend the day clinging to me in a cuddle.

We did a lot to try to bring her down to an even keel - and we were doing OK - until they started changing the rules every other bloody day and things were "allowed" one week but not the next, and school started ramping up the hysteria and now she's really anxious again and doesn't know if she's coming or going (she generally doesn't know if she's coming or going anyway). Any support she would have in school in terms of small group interventions or TA support has gone because the kids are a manky bio-hazard not to be approached and there are fuckwit parents on the playground kicking off because she still takes a schoolbag in as it's the only way she can actually organise any of her belongings so we negotiated it with the school.

We cope by gently taking the piss out of the sillier rules - and trying to work out what Horrible Histories will say about the 2020 experience in years to come.

My son is really happy

No social “noise”
Calm and predictable routine

He frets about coronavirus..... but over all he’s happily coping without parties and play dates

@Pumkinseed - yes grammatically it is incorrect. But sometimes I use it as shorthand. Personally I don't think that is ignorant. ASD is not something I 'have' I like to say 'I am' but use ASD sometimes as shorter than writing autism.

@Nottherealslimshady - I am.autistic so I know all about it! Would you say I have neuro typical? No? So I don't say I have autism.

@dairyfairies - thank you for sharing. I absolutely agree that those with intellectual disabilities shouldn't be marginalised within the ASD community/s. Carers should be able to speak for them.

I do think 'high functioning' can be misunderstood to mean 'doesn't have many problems' when that is far from the reality.

Pumkinseed - yes grammatically it is incorrect. But sometimes I use it as shorthand. Personally I don't think that is ignorant.

Let's try again. I would not say that you 'are' ignorance. I think you are ignorant. Hope that makes it clearer.

@Pumkinseed - well, yes that makes it clear as I already said grammatically it is incorrect. But there's more to life than grammar!

it's not just grammar, there is also semantics

@dairyfairies

And so that we can actually put autism on job applications, instead of having to hide it because no one thinks we're capable of anything.

That is what I mean. You don't get it. You see everything through your HF lense....The like like DD will have to put autism on their application - for residential care.... certainly not for a job application. This is almost ridiculous - only it is not funny.

I get it. I have a moderately functioning child who will need care for the rest of their life. I am what would be considered high functioning.

I still think high func autistic people can speak for the whole community.