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

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.

@dairyfairies

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.

a non verbal child with autism is not an image which needs overturning. It's not something out of some fictitious story. It is reality. A significant proportion of those with ASD are non verbal or have very limited verbal ability. why do you want to overturn that 'opinion' when it is in fact a presentation of Asd which is rather common?

I completely agree.

Why would that image be over turned when so many children like mine are non verbal.

I have a child with autism. For him this year has been spectacular and terrible, in waves. He has made enormous progress, leaps which I wouldn't have considered feasible a couple of years ago, but has also struggled in ways I'd never imagined he could, purely because his whole life was turned on its head.

However I don't for one second believe that his - or my - experience with autism either during or before lockdown is representative of anything but us. Everyone else's lives, experiences and challenges are their own, all of them.

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

So insulting to think just because you have the same label you feel like you would know what my son is thinking or feeling over me, someone that’s been in his life since every single day ..

But oh because you have autism you know him better. What a joke.

@Boulshired - they must not realise the DLA etc is based on need not a diagnosis. I have heard the same with people who may have one diagnosis the same as me wonder why I get the level of PIP I do.

@ineedsun - I completely agree. Often people don't understand what a spectrum disorder is. They think it means mild - severe and that you can be 'a little bit autistic'. Of course it really refers to the wide spectrum of difficulties people have. Some struggle more with communication, some with sensory needs etc.

And honestly, even though I am autistic it didn't help me much especially when my DS was little. I had to learn what his needs were - I didn't automatically know and was able to deal with it all just because I'm autistic!

[quote UndertheCedartree]@ineedsun - I completely agree. Often people don't understand what a spectrum disorder is. They think it means mild - severe and that you can be 'a little bit autistic'. Of course it really refers to the wide spectrum of difficulties people have. Some struggle more with communication, some with sensory needs etc.[/quote]
I think its important to note that there are some autistic adults and children that struggle in most or all areas. That there is a group that it is a disability. Ive heard before autistic adults not happy with people calling it a disability. As they find that unfair. It is absolutely a disability to some people. It could be seen as a positive to some people in their life but its also not to others and that shouldnt be dismissed.

@heydoggee

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

It isn't your place to speak on behalf of everyone else.

@Duggeehugs82 - I would suggest it is a disability to most if not all. Disability is not a negative word. We are disabled by living in a world not designed for us. A disability is something that has a significant, long term impact on your life.

And yes, I understand some struggle with most (I do) or all areas - I was just trying to explain what the spectrum means and that people with the same diagnosis can have very varied needs.

Can't we just agree that everyone is best known by either themself or those that care for them?

Can't we just agree that everyone is best known by either themself or those that care for them?

I completely agree. And I don't take issue if someone with HF sees their Asd as a gift and not a disability. Unfortunately, the neurodiversity movement disagrees with 'autism moms' of severely affected children seeing their condition as a disability and using therapy to overcome certain difficulties.

@dairyfairies
I've always felt them to be quite disapproving of parental input in general, even when the child is 'high-functioning'. Maybe it's because many parents don't see autism as a gift? Even though that doesn't mean we don't truly love and support our children.

Autism can be a gift for some but it can also be a curse.

I personally wouldn’t say it’s a gift, my son is non verbal, in nappies, can’t spell, read, write, poor understanding and has complex needs and he’s 7.

How anyone can say that his autism is anything but a disability is ludicrous.

The neurodiversity movement gets on my tits. Yes, it’s great that some people see their autism as a gift and not a disability but they refuse to consider that may actually be because their autism doesn’t affect them in ways that have a negative impact on their quality of life. And then they have the ability to shout the loudest (one could argue from the fact their “gift” doesn’t affect them in a negative way as much as others) so they think they represent us all and will steamroll anyone who expresses any other point of view.

I have a very high functioning (hope I can call him that without sounding like a total show off!) autistic child, a child who is being assessed and a child who we think is moderately functioning autistic. So obviously I know everything about autism .

I agree that lumping everyone together as having ASD is helpful to nobody.

If I say my 14 year old who has grade 4 piano and is predicted 8's and 9's in his gcse's is autistic most people think I'm either exaggerating or deluded. My mil says he has "a touch of the aspergers" which I find incredibly annoying. He is academically very able but socially very clueless. He regularly wets the bed and still watches thomas the tank engine. He is like an expat from ASDland living in NTland. He tries so hard to fit in in NTland that I have to regularly remind his school that he actually comes from ASDland. A lot of the time I feel like his difficulties are invisible.

My 12 year old is being assessed for autism but it's taken so long for this to happen. His biggest fear is that people will think he "isn't normal" so he tries and tries to fit in until he explodes. I worry what will happen when he is an adult and someone finds him crying his eyes out in the supermarket because they have run out of his usual brand of shampoo. He rubs his eyes when he is upset and trying to hold it in. He usually has red eyes, he's had loads of eye infections and cellulitis twice because of all the eye rubbing.

My 6 year old is verbal but only just. He can say words and short sentences but you can't have a conversation with him. It's difficult to know how cognitively able he is because his autism surrounds him like a massive snowdrift. Some professionals think he is of average intelligence and some say he has mild learning difficulties. He can write but rarely writes anything at school because writing the date distracts him as he loves numbers so much. He can't sit still and he can't do social distancing. He doesn't understand that he can't hug strangers and he puts all kinds of things in his mouth. We have to keep things like salt locked away or he will tip it everywhere because he likes the texture. When he likes people he hugs them and tries to lick their faces. He fiddles with everything. I'm waiting to find out if he is going to be in the class nativity play because the teacher said he won't be allowed if he fidgets in rehearsal again.

They are all very different. My 14 and 6 year old's have both been diagnosed with ASD. They have barely anything in common. My youngest gets a lot more support at school because if he didn't he would be a risk to himself and others. My eldest gets barely anything because he is a high achiever who doesn't disrupt the lessons. He gets upset because he struggles to understand why children with more needs than him but the same diagnosis get a lot more support. I have tried to explain but he is convinced that the people at school don't believe he has autism.

I think we should go back to at least having aspergers syndrome as well as autism. There should be more categories as well but that should be a bare minimum.

As the saying goes if you have met one person with autism you have met one person with autism ,nobody would argue with a person who had a child in a wheelchair that they were not disabled. ,so why do people argue that children like my non verbal ten year old child isn't disabled just because they may share a diagnosis on a very wide spectrum any one who thinks they know more about my child than me his mother just because they also have a diagnosis of autism ,great they can go to tribunal,s , attend his EHCP meetings ,have sleepless nights about worrying I have made the right decision about his high school provision ,try and work out what he wants when he's screaming because I don't understand ,and get bitten and scratched .

Have a uni student not a child... but his anxiety seems to be much less without having to people every day. School is exhausting for many autistic people.

As for haircuts, we did them at home for many many years as each hair had a feeling and it was much easier to do it that way. It involved sweets and TV and DH distracting him when he was tiny. I learned how to do a not terrible job with either scissors or electric clippers (depending which one at the time was less horrible). He still prefers clippers at home.

"As the saying goes if you have met one person with autism you have met one person with autism"

yup. My kid (adult) is nothing like a friends kid who is autistic and the same age.

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

It isn't your place to speak on behalf of everyone else."

Ok, my autistic family member thinks people first language for ASD is stupid and prefers I don't use it. I have come across many autistic adults who agree. I don't use PFL because of him. Autism is such an inherent part of him he finds it insulting to have it minimized. He has said before that if there was a magic pill that would stop him having ASD that there is no way he would take it, even if he found it easier to live in a NT world. For him autism is not a negative thing, having to live in a NT is the difficult thing. For him it would be like being called "a person with maleness" instead of calling him "a man".

"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.

@Mylittlephonyy

they refuse to consider that may actually be because their autism doesn’t affect them in ways that have a negative impact on their quality of life.

I will point out that this train of thought is also harmful. ASD is only diagnosed if it has "a negative impact on [their] quality of life" Both the ICD-10 and the DSM-5 state criteria that must include an impairment or deficit in certain areas.
Yes, for some that impairment might not be as outwardly disabling, but for diagnosis it must be present. You can't say anyone with a diagnosis of ASD (or any of the previous diagnostic labels) isn't negatively impacted.

I'm sure that's not exactly what you meant to say, but am sure you'll agree that this thread shows that language is highly important.

My DD has an ASD and lockdown was immensely positive for her. She was at home, in her safe space with her safe people, not being expected to go to preschool. The social demands of normal life were off. Bliss, for her (not so much for us always but that's another matter!).

She's started school now, and is thriving. Small class (it is anyway) but no big mixed events like assemblies or lunchtimes, set rules, even more outside time than normal. She gets social distancing even at 4 and likes it.

I feel like she will struggle more when things go back to how they were before.

But to all that are struggling with it. All people with an ASD are different and what bothers one doesn't bother another. It must be very difficult living this enforced strange existence when you find it hard to deal with changes. It's odd and hard being NT!

@DumplingsAndStew

You’d be surprised by how many of the most vocal neurodiverse movement lot are actually self diagnosed and haven’t been anywhere near an assessment. Boils my piss.

But ignoring that, there is still a spectrum of how negatively your life is impacted. You’ve got the lot who claim it’s a gift who’ve managed university, a career, a family etc and live a standard life. They may have been negatively impacted along the way but a lot less than someone who can’t manage to hold a job or verbalise enough to be clearly understood or struggles with basic life skills.

I think that was clear from my post though.