ASD…. Should there be another name for a more ‘severe’ version.

[iminvestednow]

Please forgive me as I’m new to this, I have a son with Autism. This is his only diagnosis. He is a beautiful, kind and wonderful son.

DS struggles greatly, although we have made fantastic progress in so many areas he will still never lead a ‘normal life’. He has no concept of friends, money or any social convention, he will need help to get by forever, he is extremely vulnerable.

I’ve noticed recently (great that people are more accepting) a lot of people saying, I’ve been recently diagnosed with autism aged 40 and it’s helped me so much. I think it’s great that people are getting support but does it dilute what severe autism is? Most of these people are competent fully functioning members of society and will never need the kind of help my son does. Should there another term to differentiate?

The threshold for benefits is different to the eligibility criteria for social care. If you have unmet needs, I would always encourage you to request an assessment if you would like one. 🙂

And that so wrong. You should be getting help with respite, some helping you to do the caring, the money or loan of equipment to help make daily life easier and better for both of you.
Help with enrichment for him. You deserve so much more support then you are getting. It's disgusting that you are not getting more help.

That's if you can get one. I requested one in 2012 after my diagnosis. Social services won't work with me because I require more than 30 minutes notice for an appointment (they had 2 weeks to contact me and I didn't have their number so made other plans) and their habit of taking me to places with noise.

I once walked out and got a lecture about my behaviour. Would a shutdown be better because the noise was too loud?

It’s very common for families to get no support at all now. I do count my lucky stars that we initially sought respite during the Blair years. It was by no means perfect, but it was different then. Every Disabled Child Matters paid for so much enrichment as well on top of LA having money for respite. Now many families do it all alone.

To be fair, there’s the same problem with numerous spectrum disorders. Such as Downs Syndrome. The people who can walk and talk and work etc are the “spokes person“ for DS. Then people think that’s what DS is. They think DS is a disorder where the person has a learning disability but is otherwise happy and a joy and lives a full life. And it’s not. Nobody sees the people with DS who are non verbal and can’t toilet train or walk, who have heart problems and skin sores and breathing difficulties etc.

And the high functioning people with DS (and their families) are campaigning for reduced access to abortion, and presenting this false narrative that their mild form of the disorder is what people with DS are like. Same as how people with mild autism are presenting this false narrative that’s what autism is like.

So in general I am not a fan of spectrums having the same label for everyone. Not when the spectrum is so wide. I don’t think myself (a mum with a MSc) should be classed as autistic the same as someone who can’t walk or talk. Our needs are clearly vastly different.

My child isn't incontinent. You've just assumed that.

He's not non verbal either.

I never said I wasn't higher functioning. Of course that's true. But we are all autistic.

Yeah @schlaar I think there are lots of issues around the acceptable face of disability. And also the value society places on those who don’t provide the feel good stories. I remember years ago reading a ‘heartwarming’ book about autism and then it dawning on me that the reason it was being described as ‘heartwarming’ was because the child the story was about had been ‘saved’ from being like mine 🙄

i believe society’s values in the U.K. are screwed anyway but they really becomes apparent when you see how those with severe disabilities are treated and talked about.

Support has to be fought for. It's shit but that's how it is.

You could fight for more support for your child. Have you asked your local authority for a carer's assessment? Has your child been assessed by your local authority's disability team? They can help you access respite.

Do you claim disability benefits for your child? You can use those to pay for help, equipment, replace smashed tech etc.

There will be local parents groups near you that meet regularly.

Your child's special school will have a MAST team that signpost to services, you can ask your child's teacher about that.

I always refer to my son as being severely autistic (amongst other things) and I’ll continue to refer to him as being severely autistic whenever I want for as long as I want.

I couldn’t care less about the impact me referring to severe autism has on others. His battles are the only ones I’ll fight.

@banananas1978

You seem to be humbling up your dislike for an autistic adult with disability benefits. These things are not connected. The fact that an autistic adult can travel places has no impact on the DLA of a child who is deserving of it. You talk about the possibility of brining in more proof to support applications for children, that's nothing to do with the ability of any other person with autism.

*jumbling

Thats the point I was too trying to make, not that Paddys wife isnt and their children arent but cmon, she is the perfect advert that autistic people need to get a job and their help can be cut because its not a disability but a "neurodiversity"- she can afterall, hold down a job, travel the world with no support autistic herself with 3 autistic children ( I cant even go to Tesco with my 2 diagnosed autistic children, they will have a meltdown, run to hide in two different directions,push things off the shelves to hide on them, hit out (my husband has to hold the heldest or she will hurt herself by banging her hard floor),she has no problems giving a live tv interview, something that even people with no autism would struggle with.

She is like a trojan horse for autistic people losing more support from the government, even things like occupational therapists, their help has been cut back big time. Now you must have 3 criteria person needs help with, not enough that they soil themselves they must not be also able to feed themselves etc, 8 years ago soiling oneself was enough to get help with pullup pants.

It is very much the same for Downs syndrome, etc- where one more able than most others, is plucked out to be he "face of that condition" and paraded to the nation as this is what the condition is. I am all for diabled people if possible livng a "normal" life as much as possible but at the same time there is a real risk of belittling these conditions and the goverment is always looking for cutbacks, I mean,how many people even know about OT cutbacks for disabled people? Or referrals now being limited and not every ASD referral is accepted for just even triage before accepted on the pathway.

She's not likely autistic, she is autistic. And she has as much right to travel, model and post on social media as anyone else. She may not be representative of all autistic people, I'm not sure she ever claimed to be. But she is still autistic.

If the government want to cut or restrict benefits they will, it won't be Christine Mcguinesses fault FFS.

And what is your obsession with her being in her underwear/"nearly nude"?

So are you saying autistic people shouldn't publicly be able to travel or do interviews? And how do you know she doesn't have support when travelling?

And she has a name BTW, and it's not "Paddys wife".

Where did you read out I am disliking disability benefits for adults- its opposite, autistic people need them and I personally know people quite high up in DWP, there will be changes in the next 5 years and they will hammer disabled again.

I am shocked the autistic adult I know had her PIP taken, she is very much on the spectrum and will never life a normal family life, she is in her 20s but mentally she is more like a 10 year old.

Having high needs autistic children myself I can not see how Paddys wife is doing any favours to autistic people at all, can you tell me what problems she has highlighted that autistic people face, has she even talked about the cutbacks to the health services that have been made,like occupational therapists? Or that there are 2 year waiting lists for special schools, we home ed by choice but I know many families who home ed because their children have been removed from mainstream and there no places in special schools in the area. Or has she talked about how autistic and people with learning difficulties are kept in mental health hospitals like during Victorian times, against their will while their families go to the court.

As far she has used autism in the family for keeping herself in the media ,not speaking up on behalf of ASD community and highlighting issues that small charities and people with no social media following like her are trying to fight and collect signatures for.

Sure she can,I couldnt remember her name but I am sure you got who I was talking about. I never said she can not travel,she can do whatever she likes what I am saying she is no face of autism, nowhere near it.

I would query you having to pay for transport in my lea ,chikdren/young adults get funded transport untill they are 19
but I'm with you on levels of
support ,my son currently has a disability social.worker as we get zero respite apart from a day a week in the school holidays at a special needs playgroup , he says from the assessment ,my son should be entitled to two nights a month respite but as ever there will be a waiting list ,my son has complex disabilities non verbal ,at a special school for children with severe and profound learning disabilities, he's 12 .

@banananas1978

CM has shit all to do with the DWP bad decisions. That's been happening for longer than CM diagnosis. I'm quite sure the assessment isn't based on celebrities. Neither is she being the face of autism. She is being the face of her autism and she is quite entitled to do so. She takes nothing from anyone else by doing what she does. Nothing.

Yes she does and I have never said she did not, what I was saying she gave an interview on ITV and was called the face of autism, that she represents the autistic people, spending a lot of time in the company of autistic people from different families I must say, she dosent represent even 5% of them.

No im not obsessed with her in her underwear,just saying I have yet to meet another autistic person who would make a conscious choice to parade around in that way, many are half nude/try to get nude because of sensory problems.

Who is the face of autism though?
It's such a huge spectrum,at one end you will have people with Phd,s who are married ,with children ,at the other end there will be peop!e like my son who is non verbal and will need 24/7 care for the rest of his life, and then there is everybody in between.

I completely agree there is no such thing like a face for autism or a spokesperson for autism, she sure cant speak for every other autistic person.

Hence why I was rolling my eyes hard at the interview she gave on ITV.

Disability benefits are based on need ,my son is 12 and gets High rate care and high rate mobility DLA because he's classed as severely mentally impair ed, his needs are very different to some other children,who also have a diagnosis of autism, and it's reflected in the rates of his DLA.

Yeah I know but in my area going attending a lot of meetups with special needs people many have problems moving from DLA to PIP, waiting list for the PIP decision is 4-5 months, tribunal is 9 months, insane. Meanwhile they are being sent to look for a job by the Jobcentre.

Should be both means and needs tested.

PIP has nothing to do with work