Severe Autism,can we talk about it?

[That80sgirl]

My son has this and i feel its not as well known about as Autism in which people are less affected. This is not a thread to argue about how less severely autistic people are still affected in other ways ,we know this!its a thread to talk about how disabling it is and how hard life is coping with it, and how little support is available for kids on the severe end of the spectrum.

My son is completely non verbal, doubly incontinent, cannot sit still,does not understand or is able to follow instructions, needs constant 2:1 care at all times,severe sleep issues(ie goes days on a few hours a night)our family life is dictated by his condition.

The system is broken in helping families like ours,the support just isn't there.ive spoken about this before. I just wanted to create a thread to talk and share with others in the same situation. A place to vent and share.

Ps @mumsnet Dont move my thread to SN i don't need help,im asking if AIBU

I think the whole point of the OPs post is that people with profound autism are being ignored and people like me with HFA are talking over them and their parents and it looks like this dismissal of her and her son's experience is already happening here.

Using a descriptive term to describe your or your child's autism isn't about a race to the bottom. It is a simple description of the severity of the struggles an autistic person faces.

I have seen autism being rebranded in some circles from a serious disability to a fun quirk or superpower amd it helps nobody.

I’ve stopped saying that my child has autism and now say they have a severe learning disability instead because a lot of people have a very blinkered idea of what autism is.
I also think it suits local authorities, primary care trusts, government etc to lump all these people under one autism umbrella because they can then provide (a crap amount) of provision for the ‘easier’ kids and congratulate themselves on their autism services.
The older our child has got the harder it is for us to find any suitable respite clubs. He’s not able to play computer games, sit through a film, isn’t interested in bowling trips etc..He used to access a fantastic club which took him swimming and then back to their centre for soft play/cooking/toys etc but that stopped because of covid and never started back 😢

@HedgehogB my dd(13) sounds very similar. We have got her on the mini pill, but that's dependent on her eating the food it's mixed in when she has some food refusing issues. Her behaviour and sleep is awful with periods.

This. My son would be under the asperges umbrella and I feel deeply embarrassed at times to even describe him as autistic, not because I'm ashamed of him but because the struggles he has are so vastly different to those with severe autism and we are not in need of 'equal support'.

I have seen autism being rebranded in some circles from a serious disability to a fun quirk or superpower amd it helps nobody.

I really dislike the whole "autism is a superpower" thing. It doesn't feel like a superpower when my DD shuts herself in a cupboard and bites herself until she draws blood because one of us has accidentally washed her school uniform in a different brand of detergent. That said, our challenges are nothing compared to yours, OP and whenever I tell anyone DD has Autism I do feel a need to caveat this with something like "but she copes well most of the time and school are really supportive" because I know we are lucky compared to many families.

@Hendric No, I absolutely agree with you. Language and the terms we use are important. I think the wide autism umbrella does a disservice to those who need most help and support.

@FatGirlSwim It is the autism.

The issue is people with autism with jobs and relationships who simply see themselves as thinking differently, do not like the characterisation of autism as a disability. But for many it is.

I also agree that people do talk about mild or severe in relation to other illnesses. I have mild asthma and occasionally use an inhaler. Mt asthma is very different to the mother I used to know who frequently had to do emergency hospital runs with her daughter who had brittle asthma. There really was no comparison.

Looking after a 16 year old in nappies, who is non verbal and may only use a few makaton signs, who needs 24 hour supervision and has toddler like meltdowns is extremely challenging, very physical hard work, and sometimes dangerous. There is no comparison to someone autistic with a job and a relationship even if they have their own struggles.

I think (am prepared to be told I'm wrong) before the change in diagnostic labels in the USA, they found the difference between those being diagnosed as autistic and those with aspergers was almost arbitrary. Particularly when taking into account the level of support required.

Couple that with the push to remove the word aspergers and focus on autism being more an aspect of personality that can easily be accommodated with simple adjustments and you end up with what we have now.

In fairness, for a long time autism world only focused on the most severely impacted. The people who had significant impacts but didn't fit the classic autism presentation were not represented at all. Treatments were harsh and focused on appearing normal. Autistic adults who could communicate were told there opinions didn't matter because they weren't 'proper autistic'.

As a result, things have swung quite sharply in the other direction. Where any distressed behaviour is because of an unmet need that isn't being fulfilled. Like somehow struggling parents just can't be arsed to find a solution. Not taking into account that the child/adult maybe can't explain the problem or understand themselves what the problem is.

My ds lies somewhere in the middle. Can't do mainstream. Found temporary SEN placement really hard. No suitable SEN school. So he's HE. I left work because I couldn't work and support him at the same time.

Everything is planned around him and we put a lot of support in place to keep things on an even keel. It works for the most part.

I keep my distance from all support groups.

The worst thing of all though is it makes children, adults and families of those with severe autism more invisible than they ever were. And with less support than there was in the past.

I have two DS with ASD and severe LDs. Life is unimaginably difficult. I often regret becoming a parent though I love them both.

Hi, do you get any help from social services? Have they done a full care assessment? Is it worth trying for a residential school place?

YANBU at all. Doesn't help now that everyone is lumped all in together under the same diagnosis IMO.

The term Aspergers was removed from the DSM in 2013 because it can be extremely difficult to differentiate between Aspergers and autism. I seem to recall Aspergers means autism without a learning disability and the person is verbal but there would have been many people on the border of the two.

It was discovered later into the 2010s that Hans Asperger who had worked in Nazi occupied Vienna had actively participated in child "euthanasia" (murder) so the term will definitely never be used again as an official diagnostic label.

I know that the next DSM will have autism and profound autism as separate diagnositic terms.

The difference is that it's okay to say you have mind or severe epilepsy. And those with mild epilepsy aren't offended at being 'lumped in' with those who have it more severely.

The Autism discussion is much more fraught. Obviously the activist groups are led by those less severely affected, and they want to be treated as different but normal, and with their autism being a positive thing. So they really don't want the parents of non-verbal and disabled children with autism being negative about the condition.

This thread has really opened my eyes.

I grew up with an unusual level of awareness for autism as my parent worked at one of the first schools in the country specifically for children with autism. I spent a lot of time there as a child and most of the children were on the more severe end of the spectrum. So all my life when I think of autism that's what I think of, people who have a very obvious impairment and lots of struggles. I somehow didn't realise how much the perception of autism has changed (or perhaps my personal perception was never the mainstream).

Yeah this is what irks me. I have worked with autistic people on both ends of the spectrum. I don't claim to have as in-depth knowledge as a parent of course but you can't compare a young person who attends mainstream school with a 1-1 with a non verbal young person can't feed themselves or manage their own personal care, who has to wear a helmet because they bang their head off the floor and walls for hours every day. They are at such different ends of the spectrum that the fact they're on the same spectrum is irrelevant to their support needs.

My ds lies somewhere in the middle. Can't do mainstream. Found temporary SEN placement really hard. No suitable SEN school. So he's HE. I left work because I couldn't work and support him at the same time.

@Soapboxqueen completely irrelevant to the thread but have you considered EOTAS? The LA may force you to appeal but you don’t need to EHE.

@HedgehogB this is something that really worries me. My eldest 2 both started their periods at 9 years old. My daughter with ASD, severe learning disability and GDD(functioning at under 2 years of age)is almost 8. I am so afraid of her starting her periods. Even if the GP agrees to prescribe something to delay it, we'll have to deal with it eventually.

YANBU. My nephew is severely autistic. He’s an adult and is huge so his meltdowns are terrifying. My sister can no longer leave the house as he won’t stay on his own with my BIL and will tear the house apart. They are trying to find him suitable supported living but it’s proving nigh on impossible due to the lack of availability. I’m genuinely scared that he’ll kill one of them if somewhere isn’t found soon 🙁

I'm a RNLD definitely tell people Severe Learning Disability as opposed to simply autism. Autism support has been hijacked . People who present with minimal problems with ADLs and parents of those children will say it's a superpower and parents of those with severe needs aren't able to share their experiences. They should have never got rid of the Asperger's diagnosis.

Please please phone the GP and get a referral to the community LD team. If your nephew is posing a danger it can escalate to needing sectioned if the proper support isn't put in place now. The community LD teams usually do all they can to keep people from needing to be admitted. The intensive support team might need to come out

Op, I hear you. My now adult son has a diagnosis of Classic Kanners Autism, Epilepsy, Tourette’s and only lady year Bi polar Disorder was added to the ever growing list I’d DX that is happening the older he gets.

Thankfully due to personal circumstances we can have him at home with us along with a full team of carers who provide the 2-1 round the clock care he needs now I’m well into my 60’s and not so able for it all anymore.

Please use your thread to speak amongst friends and just ignore the inevitable arse that will show up.

I find it interesting the way people can have MS or Parkinson's or many other conditions that have a range of severity where the impact can massively differ/fluctuate. But nobody questions the validity or the scale of the condition inthe was they do with autism. And with Autism it's even harder to quantify as many elements are based entirely on the autistic persons internal experience so how can people outside of that experience decide the level of suffering/struggle that a person has? Whilst undoubtedly some people are more affected by being autistic than others and there's no doubt some people are more impacted than it appears to other's surely autism is the conditions name and how it's managed is individual to each person. I think main issue is a lack of support/understanding/tolerance for autistic people.

Yes. All avenues were considered but tbh there was nothing on offer of any sort that we thought would work.

I just couldn't be arsed with them anymore 🤷🏻🙂