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 do not think that those with severe learning disabilities especially once secondary age with behavioural difficulties are part of any community, never mind an autism community. DS2 has nearly killed himself twice in the past year, once at school and last month at respite as his understanding of danger is none existent even with 2:1 support at all time. His voices need to come from his family, medical, education and social workers, and those working in residential settings. They are invisible in society.

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

well, they certainly don't speak for mine.

Agree, one of my children is asd as is my DH and it's very hard for them.

Absolutely @Boulshired we have quite a few charities for children with autism local to me that do various activities ( in non COViD times) rather than acknowledge ,that children with autism and severe learning disabilities will have very different interests and needs to those who don't ,they try to do a one size fits all and it doesn't really work tbh .

hey, can you elaborate how someone with HF ask can speak and advocate for someone with severe low functioning Asd?

And does it mean in your view that only those with Asd should speak for those who don't have a voice rather than their carers? In what way can someone with HF Asd better advocate for those with LF autism than their carers?

The only thing I for from the HF autistics in RL was criticism and being accused of being abusive towards my child because we used some ABA to successfully eliminate self harming behaviours. According to them, ABA is dog training, the self harming behaviours are part DD's autistic personality and 'training' them away is akin of abuse and trying to erase DD's personality and make her neurotypical.

In reality, all it did was making DD's and our life easier.

Fuck that shit. My DD and I deserve much better than getting abuse when trying to help her. It was hugely upsetting for us to see that the abuse came exclusively from the HF autistic community.

Absolutely @Boulshired we have quite a few charities for children with autism local to me that do various activities ( in non COViD times) rather than acknowledge ,that children with autism and severe learning disabilities will have very different interests and needs to those who don't ,they try to do a one size fits all and it doesn't really work tbh

similar here. There are a few things running which you can access with the the relevant referrals but pretty much all are just suitable for those who are moderately to high functioning. My friends DS is accessing 2-3 activities a week. DD is of the same age (teen) and has never had an out of school activities. everything that is available is unaccessible for her due to the severity of her Asd/LD.

similarly, our LA is trying to improve services for children with Send and has a few questionnaires running for children themselves to answer. which is great. But it again leaves a whole group out who is not capable of completing these questionnaires. It's just so typical. My daughter has really no opportunity and no voice. They could have easily made an alternative questionnaire for carers to complete of the young person cannot but alas, no such thing.

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.

You won't achieve that by telling those people what you assume their opinion is and therefore how wrong you also assume their opinion is. Which is exactly what happens on these threads, again and again.

@Pumkinseed

@dairyfairies - I'm sorry to hear of your experiences. It sounds really tough and very unfair.

I couldn't agree more with you daisy especially in relation to activities and ABA (my DS having hugely, hugely benefited from ABA, I can't get into a discussion with anyone, whether on a forum or IRL about how ABA is 'bad').

We have a fantastic local charity that organises many, many activities for children and young people with ASD. It has a great reputation locally, and it is well supported. Which is really great. But, beyond a 'tots' group for pre-schoolers, and trampolining (not on right now of course) there are no activities or groups that my 8yo (LF) DS could ever access. There is a huge gap. Yet, many people locally think that children with ASD are well provided for, due to the existence and reputation of this local charity.

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?

how can you call yourself an advocate for the whole spectrum if you cannot even bring yourself to acknowledge the existence of a huge subset with LF ASD.

Fucking hell this thread is a baptism of fire into ASD. Is it always like this?

I'm new to it all, my 7 year old son was 'initially' diagnosed/assessed last Monday and in the last week Me(40) & DS (5) have been referred.

I didn't even know there were activities or groups and I've just had to google ABA which sounds like it would help my son a lot

But this--
According to them, ABA is dog training, the self harming behaviours are part DD's autistic personality and 'training' them away is akin of abuse
There are not enough Fuck Offs in the world to respond to them unless I'm missing something huge.

Where's all the fighting coming from?

Where's all the fighting coming from?

It’s sad isn’t it? I don’t really like commenting on threads about autism on here any more after being told I was horrible for hoping my autistic son would be able to talk one day, and that I didn’t love him for who he was because of that.

I think when you have had to fight hard for support and awareness for yourself or for someone you love and advocate for, it is hard not see everything through that prism.

The terms 'Special/ complex/additional Needs' or descriptor 'Disabled' is like trying to describe a vast forest of trees with one term. Each tree is different and each tree itself has it's own differing branches....there is no uniform 'one way'...within ds's tree of a particular genetic condition there are people with chronic medical needs....others are only affected in a minor way, some have ADHD and are autistic...others have traits, some have severe learning disabilities...others have mild.

On mumsnet there has always been this tricky conversation within differing branches of the 'autism community' - all the difficulties around the terms high and low functioning, autistic adults and parents of autistic children...then patents of autistic children and parents of autistic adults, autistic girls being described as always 'masking', children with autistic traits as part of or as comorbidities with other conditions feeling finding it difficult to find a place and I remember feeling like everything was about autism, and any thread about other disabilities or needs were only about 3 posts long!

The one thing I would say is we are all in the same forest...even if we're in different parts!

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

Fucking hell this thread is a baptism of fire into ASD. Is it always like this?

Honestly, yes. Not just on Mumsnet but on all social media. In particular there's a big divide between autistic adults (ones who are HF enough to use social media and advocate for themselves) and what they disparagingly call "autism moms" - mothers of generally-LF autistic kids.

It's interesting, even in the very small 'community' of ds's condition it feels like a real divide between the 'cure the disease' side (largely American) and the awareness and advocacy side.

'Tribes'....so much better than my waffly forest stuff!

@dairyfairies

High functioning and otherwise, we ARE the actual autistic community.

you seem to assume there is one autistic community. there is not. My daughter has nothing in common with the high functioning crowd who often thinks they speak for the autistic community.

You have no idea what's happening in the minds of autistics unless you're autistic or ask alot of autistics.

I think this amplifies the issue with the neurodiversity movement where only 'autistics' can speak for those on the spectrum.

I do know know what is happening in Dd's mind. Nobody does and she cannot verbalise it. Where is her voice if you argue that only those with autism can speak for the autistic community. You say no individual should be marginalised by you do this by excluding those with severe Asd who cannot speak for themselves but only have their carers to advocate for them.

My daughter, along with many others with severe Asd has only her family/carers who speak for her. It is certainly not those on the HF end who think they got an understanding of what it is like to live with severe intellectual disabilities and Asd...

This 100%. I could not have said it better myself. I have a severe non verbal daughter with asd and surely i should be the one who speaks for her being her sole carer even if i dont have a diagnosis myself

@dairyfairies

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?

Agree 💗

My dd is loving it, she's older at university and everything is now online, she doesn't have to deal with her classmates anymore

As an autistic adult with an autistic DS I really don't want to be lumped into a 'against 'autistic mums' and non-verbal DC'. I admit I have little experience of non-verbal DC but I absolutely believe their carers are best placed to advocate for them. I do see my autism as something to embrace - it is that attitude that has really helped me. But I still absolutely see it as a disability! My hope is that all voices can be heard as each is important.

Personally I found the umbrella term of ASD did not help, any person who as an adult has the cognitive ability of a toddler is severely disabled but the use of the term severe autism implies that others have a mild disability even when this is not the intention. My brother had an Asperger diagnosis but had severe mental health problems. I have been questioned on why DS2 gets high rate mobility, respite, 2:1 in special school, because their child has an autism diagnosis and doesn’t receive the same. I would not be asked this if he had been in a car accident and left in the exact same condition but because it’s autism it’s all up for debate.

I find this so upsetting.

My son is amazing and I don't want to change a single thing about him. His autism is a big part of him and his character. We've spent years supporting him to understand himself, his strengths and find ways of helping him cope with the demands of the world, but by virtue of the fact that I'm his mum it's assumed that I want to turn him into some sort of a clone. Supposedly I understand him less than someone who hasn't even met him.

How can this be? How can it be that it's considered OK to assume that everyone is the same just because they share a label.