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

There is a difference between being impacted less, and not being impaired at all.

I can only comment on what you've said. You might believe its possible for everyone to infer your meaning from what you meant to say, rather than what you said, but not everyone can do that.

I do find it a bit frustrating that, on a thread about ASD, I feel the need to point that out.

For my ASD son, Covid restrictions have been a real blessing. He started at high school this year and the small groups, not changing class rooms for lessons has been brilliant. He would not have coped otherwise.
Same with home schooling, he loved it. He did most of his socialising on-line so that just continued. He has accepted his new way of life, I think because he see's a lot of situations as 'black or white'. A lot of choice has been taken away, therefore less decisions to make.

I can totally understand why some would struggle though if they can't accept any changes at all.

@TruculentandFarty
It is a little bit like saying blind people should not be heavily involved in issues strongly affecting the blind because blind people are not all alike. I don't think that anyone would argue that local authorities should not consult with blind organizations in their area when (say) making changes to pedestrian crossings.

You are right, and it is important that people who have disabilities are involved in planning, have input into how public information is imparted etc....but just to add to your comparison about blind people being consulted, which of course they should be - would you agree that it might be important to also have a consultation that involves people who are blind but with associated learning disabilities, or physical disabilities, or another sensory impairment, or carers of people who may need lot of support to access the facility and support in getting their interests heard.

We have a new special school being built nearby, and as well as consultation involving the children who will be attending, they also involve parents and carers - those who advocate for their children.

Autism is such an inherent part of him he finds it insulting to have it minimized
It's strange, because ds' condition is very much a part of him, it is quite literally written into genetic code! It affects every single aspect of his life, physical, health behaviour, appearance, communication. But, as with Downs Syndrome, it would seem really wrong to say 'Hazeyboy is Xxxxx' or 'oh oh yes, Hazeyboy's friend is Downs'

Of course people with autism should be involved with planning services etc but equally parents and carers of those most impacted and who don't have a voice should be involved because otherwise the most vunerable will not get their needs met are we saying that people like my non verbal child who has no idea he has autism or learning disabilities don't matter ?

@dairyfairies - I don't think seeing your own way of thinking as a gift to you means you can't also see it as a disability too. Some might set these out as opposed to each other - I personally don't.

@elliejjtiny - my ASD boy is also very academic. But that doesn't mean he doesn't struggle like hell. Seeing him self-harming and just completely broken and sobbing every day as he finds things so hard to understand and cope with...yes, in some ways his ASD is a 'gift' - it makes him who he is but it is absolutely a disability too. My heart breaks for him everyday and the guilt that I passed it down to him too 😞

Someone may be 'high-functioning' but it doesn't mean their quality of life is not seriously affected and that they have a disability.

I don't disagree @UndertheCedartree ,but there is an element of the apparently autism community who refuse to see Autism however it manifests itself as a disability and that doesn't help anyone

I don't see the connection between lockdown and this lad getting a haircut, seems it is always stressful for him lockdown or not.

Isolation has perhaps given some neurotypical people a taste of what life is like all the time for some autistic people.

@Mylittlephonyy - I've been to university, I've worked, I have DC - I most certainly have not led a 'standard life'. I think perhaps them is as much misunderstanding around what someone with 'high-functioning' ASD's experiences are as around those with 'low-functioning' ASD's experiences are. As they say you have no idea what happens behind closed doors.

@x2boys - agree

@dairyfairies

Where's all the fighting coming from?

it is largely due to the evils of the neurodiversity movement. According to this, autism is seen a a gift and an integral part of their identity. It's something to be embraced and celebrated. It's not a disability.

If you have a low functioning child and you attempt to use therapy to modify harmful behaviours or develop certain skills which the child otherwise would struggle to acquire you are an evil parent trying to change the child for what they are. Autism is seen as an integral part of the person not a condition as such.

If you do some reading on the neurodiversity movement and what it stands for, it may not be so hard to understand where the arguments come from and why certain groups strongly disagree.

There is certainly no one autism community but many tribes. Welcome

The thread was going fine until you came on here spoiling for an argument.

You don't like high functioning autistic people, we get it. We don't count, we're not autistic enough for you, or that were all part of some sort of evil 'movement' that has it out for you. Pease leave us alone.

Abogiufd
I dont thinj thats fair at all, i completely agree with them and i dont dislike HF autistic people what a ridiculous thing to say. I have severely autistic daughter, she is non verbal and i have as much right as a HF autistic person to speak on her behalf.

It’s easy to understand the conflict, the change of diagnostic alongside autism awareness have led to damaging stereotypes that impact how the world see autism. I had years of useless shit analysis and some from people in professional roles. I have a son with low intelligence and a brother with high intelligence and both have suffered with wrong expectations of their condition and their needs.
As for the boy with the haircut, DS2 has never been able to go for a haircut but the things he was capable of before covid have regressed. Years of effort to allow him to access the community have gone backwards, he is now the bull in the china shop.

@TruculentandFarty

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

No they can’t, you don’t speak for my son. I speak for him. I think it’s a bloody cheek that just because you have autism you think you can speak for others."

Someone has to speak for the community, not for your son in particular... make policy, produce guidelines etc. I personally think that it is better that ASD people do that for ASD... with input from carers, parents, teachers, SW etc, but definitely autistic people. You can still be a strong advocate for your son's needs and have policy made by people who have some of the same experiences as him.

In the past these things have all been decided on by people without austism. People like politicians, teachers or social workers have made policy without the input of the community.

It is a little bit like saying blind people should not be heavily involved in issues strongly affecting the blind because blind people are not all alike. I don't think that anyone would argue that local authorities should not consult with blind organizations in their area when (say) making changes to pedestrian crossings.

No, just because someone has autism, The same diagnosis as my son it does not mean they know him at all and they have no right talking on his behalf. Equal input from people who have autism but also people like myself who are NT that deal with my sons level of autism on a daily basis are needed.

HF men and women with autism have no right to say they can talk on behalf of the whole community. They are one person.

I think it is always best to check with the individual.

Well, sure, but how is that supposed to work if we are trying to work out what phrase to use in an internet forum, a blog post or a newspaper article which might be read by thousands or millions of people? Some common agreement about accepted usage would help.

aeon.co/essays/why-the-neurodiversity-movement-has-become-harmful

A lot of the neurodiversity stuff makes me roll my eyes, by the way.

There is increasingly an insistence that parents refrain from showing any footage or images of a child who is, say, non verbal and has severe learning difficulties--"privacy" is always given as the ostensible reason for this, but there also seems to be a growing desire to avoid showing images of autism that seem negative in any way. The downside of this, of course, is that parents who are facing the most terrible struggles may end up having their difficulties minimized, or even being blamed for them ("That child's behavior is just COMMUNICATION. You are causing this by not communicating with your child effectively" etc. etc.)

The thread was going fine until you came on here spoiling for an argument.

You don't like high functioning autistic people, we get it. We don't count, we're not autistic enough for you, or that were all part of some sort of evil 'movement' that has it out for you. Pease leave us alone.

Except no-one has said anything like this, have they? Why are you making stuff up?

Haff, I certainly did not... I decided not to reply to this nonsense.

I am autistic and really don't care about the am/have/with (and I of course appreciate that others don't feel the same way). What I do care about is that people are often chased away from discussions about autism because they use a term that someone disagrees with.

I know people who say:
I am autistic
I have autism
I live with autism
I have aspergers
I am an aspie.
I have asd
I have a hfa diagnosis
I'm on the spectrum

There is no 'right' way to refer to autism, it's a personal choice for the individual, so it's unfair to pull up people on internet forums for not using your preferred term. I do wonder what people hope to achieve by doing this.

@heydoggee

Autistic people prefer not to described as 'having autism' or 'with autism' btw

Many people with autism actually prefer not to be referred to as autistic. It's very personal for every person, so please don't say something like that as fact when it isn't.

@heydoggee

Autistic people prefer not to described as 'having autism' or 'with autism' btw

That might be the case for you or people you know, but you can't speak for everyone. I prefer saying my son has autism rather than "autistic son". Autism doesn't define who he is, he's "name" first who happens to have autism.

Why the fuck is her instinct as a parent when her child is distressed in a public setting to whip her phone out and take a picture?

I just don't understand it.

Also very hard for children with learning difficulties. My son is in Year 11, he has an EHCP. Struggling with cover teachers that don’t know his needs and so many teachers off isolating. So worried about his GCSEs next year and his mental health.

Haven’t taken my 7yr old son to the barbers since he was 3 as it was really distressing for him, we cut his hair at home with clippers so we were prepared for lockdown in that regard.

He doesn’t like video calls or phone calls. He has very reluctantly said hello to his grandparents a few times this year, but refused to join in with any school zoom calls.

He’s delighted that he can eat his packed lunch in his classroom or playground instead of the noisy school hall. He’s also happy there are no big school assemblies, etc, this year. The school have staggered play times, so he’s not in the playground with the kids who were picking on him last year - he seems more confident now.