Those with severe autism need their own diagnosis

[Cubic]

Ok so, I'm being brave and putting my head above the wall. This is a long one as it's an emotive topic.

The autism diagnosis changed in the dsm (American diagnostic manual) in 2013, than hit the UK too and our diagnosis changed to include people who would have been diagnosed previously with other conditions; Aspergers, childhood disingenerative dissorder, retts and pdd nos. Aspergers had links to the nazis, there were concerns that the other conditions wasn't taken as being as serious/ a disability, funding wasn't aimed at those who were seen as "higher functioning".

The dsm gave levels 1-3 depending on support needs. Some people fluctuate and some just stay at level 3 all the time.

Until this point autism was seen as a severe disability. Those with the diagnosis were seen as being disabled, this wasn't questioned.

The diagnosis changes linked with the neurodisability movement and self diagnosis has meant that those with the most severe impairments are now not as catered for. Many of those with the most needs lack the ability to communicate and therefore can't advocate for themselves. Their carers are exhausted too.

Those who would be seen as more able can suffer with severe mental health issues that aren't always treated due to them having the autism diagnosis.

Profound autism is being tabled as a way to seperate the diagnosis so that those who have extremely limited communication, low iq and require constant life long care etc due to their autism not mental health can have seperate diagnosis.

This is opposed by many of those who are more able. One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.

I support the profound autism diagnosis. I think there is a world of difference between those maybe diagnosed later in life, who work and have family and friends to those who require support in every area of their life for their full life (all the time, not fluctuating), with no communication who can't access our world.

This doesn't mean I don't recognise the needs of those who aren't profound.

IABU for support a seperate diagnosid
IANBU for wanting a seperate diagnosis for those with severe/ profound autism.

• knowing how these threads can go, I may not reply to every question, statement or post.

** I'm aware that terms like high/ low functioning aren't supported by many of those who are able to communicate well.

When my daughter had selective mutism we worked really hard with nursery to get her to use flash cards or makaton. She was so shutdown she couldn't use anything. They would have to study her really closely as she would briefly glance at a flash card. Its really not as simple as saying get them to use sign language.

I never said it was simple or a cure all. It was just a question, suggestion,Sorry it did not work.

But as you also know, it's a huge postcode lottery. My severely or profoundly autistic son who also has LDs is at a special school. That's all. I mean sure, we get the odd 'disability companion' free or reduced entry but I'd rather not be in a position where we needed that. His special school doesn't have an after-school club, none of the local autism charities run anything at all that will work for his needs (it tends to be really expensive to run things with enough staff that people get 1:1), we have tried several times to get a SEN social worker so we can then apply for respite, only to be knocked back and told he doesn't meet criteria (he's run away several times which necessitated the police being called...), and respite opportunities in our county are like gold dust anyway. The idea of him having overnight respite even once a month is a pipe dream!

I'm not having a go at you, because ALL young people with your and my son's needs should have all that provision and more, and I'm really glad for you that he has it, but I don't want people reading this thread to think that profoundly/severely autistic people have that level of support uniformly, because they certainly don't.

I can’t even fill out a form! Or ride a bus or a train.
So much I can’t do.

I agree with you.

one of my cousins has 3 kids, a DD who is NT and 2 DS, both of whom have an autism diagnosis.

one DS is in mainstream school and for all intents and purposes leads a “normal” life. He had support and therapies and is learning to manage meltdowns before they get bad and how to cope in social situations

her other DS is profoundly autistic. He is 11, still in nappies, severe mental and learning delays (he was assessed at understanding of an 18 month old), he needs constant supervision, doors have locks up top because he constantly tries to escape the house, bangs his head repeatedly on the wall/floor and has recently started having to wear a helmet to protect him from himself. He lives in his own world.

but they both have the same diagnosis. It’s nuts

You clearly don't have severe autism in the way we are discussing in this thread. You are able to read, understand, articulate a response and try to insult somebody. The people I am referring to as severe will never be able to do that.

@Urgentbiscuitrequired my condolences, I lost a parent in similar circumstances (lung cancer)💐

My child is severely autistic. He will never be able to type what you just have. I hope he can, but given he is seven and functions at the level of a one year old, I think it is highly, highly unlikely. You and this poster are arguing about two completely different presentations.

Autism has been identified as occurring from many different genetic mutations, some completely random and not inherited and would be regarded as chromosomal disorders if this was known. As they present as having some ASD traits, and the exact mutation is not known or tested for, they get an ASD diagnosis. There are many different causes and different presentations within the spectrum, which tells me they are different disorders. They need to be separate. It is so much more complicated than being a spectrum and it's lazy to dump everyone under that. People need to be diagnosed properly and fully using genetic testing.

My son would literally eat the form.

It's so bloody hard isn't it.

When he was in nursery, the nursery had these little garden fences separating the areas and DS had managed to pull one off It's stand and onto It's foot. Terrible idea really, don't know who signed off on it.

He seemed fine for a few hours but then he was gnawing, quite literally, at his foot, so took him to A&E where the nurse said because he is non-verbal she has to report me to social services because he can't corroborate it happened at nursery. I'm not angry at the nurse for reporting and nursery were also contacted and agreed it happened on their clock and they neglected to fill in an incident report form, but before that incident I'd never even considered that there are so many instances where social services might end up in our lives against our will.

Thankfully in this instance it was just severe bruising, from his likely though unknown back then delayed blood clotting disorder.

Another was when we were referred to the children's the next city over for his allergy testing and he eloped the room and I had to scoop him up and bring him back and the doctor came in and asked to check his chest and back, so off his t shirt came, and under his arms where your thumbs would go when lifting a child were millions of petichae and brand new bruising, it looked like in the 5 minutes the doctor had left us that I'd gone to town on him. Thankfully that doctor was very understanding but after the foot incident everything in hospital makes me feel like I am doing something wrong.

What I will say is this though the staff at Sheffield Childrens Hospital have never given me cause to feel that way and have been a lot more understanding about how autism associated developmental delays impact DS behaviour and how we respond to it. It's mostly been at our local general that I have had these issues.

Surely the 11 year old has Autism and a Learning Disability? See my earlier post re LD not being mentioned any more.

It is really hard to get autism with LD diagnosed. We are battling for it now.

The issue is that we are already struggling to get support for those children not seen as profound autistic because so many people don't realise the support that is needed.

We have battled and failed to get the support out child needs because they can talk and they can dress themselves so their needs aren't as obvious which means their needs can be ignored. By contrast the support given to those with more visible needs is immense

It's highly frustrating as some families get so much while others aren't getting anything that's needed. The right support at the right time is the difference between those you see as mild needs being able to work and participate in society as adults. But the lack of support means the chance is far lower.

I am against the change of diagnosis for those not seen autistic enough.

People may be autistic or autistic with other needs.

So autistic with hyper mobility

Autistic and non verbal

Autistic, non verbal and complex needs.

It's already possibly to explain how autism impacts people differently
It is not appropriate to try and make out that some people aren't properly autistic

My daughter is 10 has been fine in mainstream. Academically she's a good few years behind. Yes she's now verbal. She shuts down rather than meltsdown. She's seen as the good quiet child in class. But masks all day.
She was diagnosed as autistic at 3.
She has "friends" but is very emotionally immature. She will be attending a specialist provision for secondary school. Has daily speech and language support. She has no super power areas at all, no encyclopedic knowledge of any kind, no areas of special interest. If anything she has a really low IQ. Maths is a real struggle for her.
Not that it matters she's a joy to be around, sees the world in a really unique way. Is 99% of the time a really happy charismatic special little girl.

I have no idea where she would fit in this profound or not profound categorisation. She will need life long support but should with the right education and interventions get paid employment.
I think she is also dyspraxic and has a suspected learning disability but as she is already autistic getting further diagnosis is really hard. I really feel with splitting autism into categories that her support wouldn't be as easy to get. But I do wish that rather than stopping at an autism diagnosis further support and investigation could be used to support additional diagnosises to narrow down what else could be going on.

She may be able to articulate in a way you find acceptable via typing in a forum where she can take time to consider her thoughts, draft and edit her response. In a face to face situation she may not be able to communicate at all or have other barriers that you are unaware of.

Personally I tend to say I have Asperger’s because it fits best. Even though when I was a child I would have horrific meltdowns where I would bang my head against the wall and bite and I didn’t speak till I was 4, now I’m an adult and have the adjustments I need Asperger’s fits better. Also, most people I meet seem to understand it more in my experience. I think autism fit when I was a child, but a lot of my issues stemmed from my environment and the fact my parents were not able to deal with me properly (especially at first, after 5 “normal” kids it was definitely a shock).

If I tell someone I have level one autism, it’s met with confusion, when I say Asperger’s it’s normally met with “oh I did wonder” 😭.

As a parent of two DC who are autistic but do not have learning difficulties and are verbal (inside the home anyway), I think that parents of autistic children who do have learning difficulties, are not verbal and cannot care for themselves require much more support in caring for their DC than I do. I think this is an area that requires a lot more resourcing. There should also be specialist educational provision available and access to supported groups etc. I think life for those parents must be really tough. I also think that with profound learning or communication difficulties there is less chance of improvement so there needs to be properly funded resources for autistic adults who will require long term care.

For those more like my DC, if there were better early intervention, more mental health support and changes to the general mainstream educational approach, I think the challenges their autism brings would be far less. My DC is verbal but has quite "severe" social communication difficulties. She cannot communicate with people outside of close family and friends. There is no pathway for support with this kind of difficulty although there are methods that have been shown to create improvement if started at an early enough stage. We have been turned down for support since she was three.

I have actually found that getting support for mental health difficulties is worse if you have a diagnosis of autism. My DC has been turned down by both the mental health and eating disorder teams because she is autistic. I am quite sure if she presented with the same needs without the diagnosis she would have been accepted. I think with the right levels of support, some autistic people would be able to live lives where their autism impacts them less and they could contribute more. Eg, for the moment I can't see how my DC will ever be employed (who will give a job to someone who doesn't speak?) even though there are actually many jobs she would be able to do.

I completely see the points made by the parents of children who are more profoundly affected but as there will always be a range of levels of difficulty, I don't know that changing the diagnosis would help. I think focusing on different types of support would be more beneficial. At the moment it seems like nobody at any level gets the right care and support.

A diagnosis won't get you support.

Your needs must be quite high to get any kind of support.

My son who is academically very able but has an autism and and an ADHD diagnosis, is on the brink of getting a specialist school place in September. We had to fight almost a year for this. He has significant struggles in mainstream school and is currently on a reduced timetable of 1 1/2 hours a day.

DS was diagnosed at 2.5 with ASD (and that was a while back as he's mid-teens now, we were fortunate to get him assessed by a panel within about 6 months or so of asking our GP to refer us). However, despite it being pretty bloody obvious that he also had LDs, this wasn't part of the original diagnosis. At 5, he went to a SS which was specifically for kids with moderate-severe LDs, on his EHCP, and at that point we naively assumed the EHCP included his learning disabilities. It didn't, not explicitly, and when we much later tried to get him moved to another school better suited to his needs, we fell at the first hurdle because the EHCP didn't record his LDs, despite his having been at a school that was ONLY for kids with learning disabilities ...

In the end, to expedite the new school even looking at him, we had to pay for a private assessment for LD (the LA waiting list was 2-3 years - in fact we may still be on that waiting list! but then our local LA are clowns when it comes to SEN). His EHCP now, finally, records his diagnosis of ASD and LD.

Of course, with a child who's severely affected by their autism, it's very very hard to get them to comply with diagnostic tests for LDs, which I think was why DS wasn't tested for that much earlier in life.

I think that you're being reasonable. There's Asperger's in my family and though we have some difficulties, we don't face the same challenges as someone with (for want of a better expression) severe autism.

This is interesting because even before the changes to encompass all under ASD, you wouldn’t have been diagnosed with Asperger Syndrome if you had a language delay as a young child.

By contrast the support given to those with more visible needs is immense

For many, this isn’t true. Often support by services is only given to parents who have advocated and enforced their DC’s rights, often via the legal system. Even with significant visible needs, few receive all the support required easily and many are still left fighting for support.

I know it's not quite what you have said, but there's an implication here I want to pick up
Just to say, "selective" mutism doesn't mean "this person is selecting when they will speak". It means, in medical terms "this person has mutism which is not pervasive; ie they are able to speak at certain times and to certain people."

Incidentally signs, cards and pointing don't tend to work for those who have selective mutism becayse it's typically a communication breakdown, not just a speaking breakdown.

Anyway, Obviously a completely different situation from being cognitively pre-verbal, as you say.

She said she ate paper as a child, how old is your son? Over 50?

My intention isn't to make out that some people aren't properly autistic, I'm sorry if you read it that way. I did try to make my opening post reflect both sides of the debate but I do admit to my own bias.

The argument you put forward about fears of others losing support I think I did put in my OP. I reject this reasoning as I see it as support by association rather than support of their needs. They should be getting their needs met because they have them and not because somebody with the same condition may have them. As this thread shows autism can be so different for different people, not everyone requires the same support and those supports may not be appropriate.

Keeping the diagnosis together to benefit those more able can come at the cost of those I've been calling severe and their families. They shouldn't have their needs sacrificed to meet others.

The expansion of the diagnosis and the increase in self diagnosis will impact this further with a shift of autism moving more towards the norm with more people getting the diagnosis with less needs.

The other big point is that people with severe autism and their families aren't having support thrown at them. It's all one big fight but breaking the diagnosis could help us.