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 One of the reasons given is that their autism would be seen as "mild autism" and support maybe withdrawn.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.

And if it can change daily the understanding is obviously there unlike for a lot of profoundly autistic people. Maybe it should be based on what the needs are for most of the time like how DLA view it. Parents of profoundly autistic children are struggling every single day more often with no support, this is not me saying that those who can dip in and out of severeness each day don’t deserve support but I believe it should fairly based on a who needs it the most first

Wherever you set any boundary people on the edges will dip in and out. It's not something that can be avoided.

It's a lot easier to support if it's consistent. Changeable profiles is why terrible situations arise.
If a child is always needing 1:1 support everyone is aware. If the jump in water. Everyone knows to avoid water areas or be prepared.

If your child is normally scared of water and won't go in it normally but once jumped into a lake 7 years ago your prob not prepared or expecting them to do it again tomorrow so you are less prepared and it is more likely to be far riskier.

That’s a really good point actually you’re completely right and it reminded me of just how unpredictable my son can be at times

It doesn’t fluctuate daily but over years.

If they didn’t have support they’d be dead so not really getting your idea of because they’re verbal they don’t deserve support.

I didn’t say the system was equal or fair. You have again made that up. The system not being equal and fair doesn’t mean it isn’t an option for everyone. It is.

Without treatment you progress through the Stages of cancer until it kills you. Not the same at all.

No it isn’t if you don’t have the resources.

You don’t need resources. It is possible to appeal without spending money. And for resources such as the ability (for whatever reason e.g. parental disability, EAL, etc.) to complete forms, work on the WD, etc. there is support available for that. No, it isn’t easy, quick, fair or equal and some decide for a multitude of reasons not to pursue it, but it is an option.

The poster I was originally replying to is capable of posting on this thread and has the time to do so, so if she wanted support, and she has said she made the decision not to pursue support and EHE instead, which is, of course, her prerogative, she is capable of posting a thread on MN or seeking support elsewhere online or in-person if she wanted/needed it.

Yes, I agree with you. I have said as much in some of my other posts. I personally don't think there would be any substantial support offered if there were an alternative diagnosis, nor do I think what would be left of autism suddenly create this utopia of low needs with similar and non-spikey developmental profiles.

However I do think there are instances where it can be beneficial to let service providers know that they are being used by someone with substantial needs, extremely limited communication skills and may not be able to understand their situation, environment or provide consent by explaining theor service user is profoundly autistic.

Yeah yeah we know all that however it’s well known that those with more money in better areas, who are more educated, have more support and leas disadvantages etc etc have more chance of walking away with an EHCP at every stage. The system isn’t working and is unfair hence it being changed. Some people simply don’t have the capacity to go through the arduous and unfair system, they just don’t. It’s not a choice it’s reality.

He would shout at it/us, likely throw it if he had chance, and if not immediately removed - meltdown and mood change that would last for that day as a minimum.

Last time we tried changing something he also didn’t eat for two days after refusing that meal.

I think whst you are not undestanding is that op,s son like my.son diesnt hsve to csapacity to understand somebody sayig Haribo are free my son would just pick somobody elses haribo up becsuss he likes haribo he doesnt understand socisl norms
Also he wouldnt undrstsnd somone telling hin to chase a girl and kiss them when he kisses me he offers me the top of his head to kiss
Occasionally he will kiss my eyebrow.

I meant parents of profoundly autistic children/adults who are often providing life time care without support. I did say in my post i wasn’t saying those with less care needs don’t deserve support, a child being verbal doesn’t mean that they don’t still have extremely high care needs. I believe those with a higher level of care needs deserve more support. It should be proportional to the care they require in my opinion

As I said, I didn’t say it was fair or equal or easy. That is you lying about what I have said. It is a choice people make. It might be a choice they feel they have to make or not, but it is a choice. A decision they make.

No it’s not a choice for many. For some they simply don’t have the resources or capacity and can’t do it. That is not a choice.

Yes, it is a choice. It is a decision to be made. They may decide for whatever reason not to pursue it, but that doesn’t mean it isn’t a choice.

Yep and some of us with verbal kids have very high care needs and need and are entitled to that support without which our children wouldn’t be here.It makes no odds if they are verbal or not. They need it,hence the complete lack of any point to this thread. All support and care needs are based on need,not a meaningless label and that is never going to change.

It’s not a choice if it can’t be done. Check your privilege. Only a person who has no idea of the reality for those unable to take on the system would say something as ridiculous as that.

I'm going to guess that what you originally wrote was highly offensive.

A kid who could get involved in county lines or be taken advantage of in the way you describe has different needs to those like my son. Their vulnerabilities are different.

The group you describe will have some understanding. They'd need to for those situations to apply. That understanding usually implies communication of some form or another. The kids i'm refering to as profound would not only not understand any abuse they also wouldn't be able to communicate if anything had happened to them.

You keep pushing that you're advocating for those who would miss out marginally on a profound diagnosis but the kids in your example wouldn't be included. They have a greater skill set. That can be true at the same time as those kids being vulnerable in a different way abd requiring support.

It is a choice. There are 2 choices - do or don’t. Some choose not to, sometimes for complex and multifaceted reasons, and that is a perfectly valid decision, and, for many reasons, some feel forced to go one way or the other, but it is still a choice. A decision. An option.

I don’t need to ‘check my privilege’. I know exactly what the system is like. Including for those who feel unable to pursue support for numerous reasons. I have supported hundreds such parents over many years. Some parents feeling unable to pursue support doesn’t change that it is a choice. That isn’t ridiculous.

I think you are missing my point because we agree that very high care needs deserve the most support don’t we? Being able to communicate was just one point I listed as an example, I didn’t say that autistic children who can communicate deserve less support I know there is a much bigger picture. And I think we both know there actually isn’t much in the way of support for our children anyway other than what we provide. I think that high care needs autism should be labelled as such to open up extra support for those who desperately need it

I can see both sides to this. On one hand there are clear differences between the level of care people need. On the other hand is one care need “easier” then another?

for an example (apologies if I’m not communicating this well) I have one DD16 who has a diagnosis of ASD/OCD/Anxiety and ADHD. Currently under CAMHS unable to leave the house and attend school. OTOH I have DD3 who is very clearly autistic. Her needs are easier to meet in that they are support with personal care so can be easily met. DD16 whilst she is very intelligent has needs that are very difficult to meet. Hopefully the therapy and meds from CAMHS help with this.

I hope that made some sort of sense.

I am still on the fence about splitting up the diagnosis, I can see both for and against.

Profound autistics don't vary, they don't have that priviledge. The difference is that some people are severe all the time and not at intervals.

This