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?

That word is so offensive.

By the same token there will be some people who will be profoundly affected their entire lives ,my son is 12 and has never gained any speech ,he communicates on a very basic level, and goes to a special school for children with severe and profound learning disabilities,he is our of nappies but he was 9/10 before we eventually got him toilet trained .

I didn't mean it as an abelist slur.

I rescind that and replace with 'thunder cunts'.

I agree that high functioning can be damaging as it is often wrongly inferred as less affected. A good friend's daughter completed secondary school but seems to swing between suicidal and extreme risk taking behaviour. Friend is deeply concerned for her future and equally fearful that she may not have one.

And as per usual this has descended into a race to the bottom which is always the issue. These topics sadly tend to divide things more rather than actually help anyone.

people try to make out is “Asperger’s” or “profound” when it is no where near that simplistic. My son is academically able (although with a spikey profile) but needs full time 1-1 both in school and at the age of 13 couldn’t be left without an adult. Like everyone with autism he has a specific needs set to him and his individual presentation. The only box he will fit into is the “him” box.

trying to narrow things will lead to less people getting the support they need athée than more in my opinion.

what needs to remember is it’s individuals with individual needs.

But what you call high functioning can impact so much on daily life that they’re not able to live independently. They are often unable to form relationships and parents will be caring for them for life. Language may be there but at times the anxiety is do high they actually can’t speak. It’s much more complex for many than you sen to think.

You sound ignorant.

I can see your point to an extent.
However I would be classed as high functioning with autism and ADHD Iv worked full time. Been married had two children.
But.. what you don't see is when I get home and can no longer function.. I go non verbal.. I can't decided if I need to use a spoon or fork so I just won't eat. The amount of debt and trouble managing money. The thoughts of unaliving because I just can't cope.
The constant replay of a script I play in my head to be able to communicate with others, having to really think about and work out what some one means.
The amount of bullying I had growing up and as a adult. The number of jobs iv lost it had to leave as I couldn't handle the over stimulation.
There's so much more..
So yes I can put a mask on...but it's tiring and gets harder the older I get.

Autism is a spectrum.... We all have different levels of support needed.

Sending love. My daughter is only 6 but she's so similar already, the pressure of the day gets to her when she comes home and she just can't function at all.
It's heartbreaking, especially with the disordered eating, anxiety and self harm already. I hope you have a good support network ❤️

Exactly.

All these people that aren’t happy with ASD not being split up into boxes annoy me. You don’t need to know what someone’s ASD means unless you are a health professional involved in their care or a school etc. These people will have detailed information on the individuals needs and issues, the rest of you really need to keep your beak out.

Don't be silly. There are delineations in blindness. Partially blind, legally blind, completely blind, etc. Blurry vision is not blindness.

I would also add that alitnif people who need 1 to 1 care will have autism alongside another diagnosis such learning diberculties or global development delay...

Yes people will allways have to harder or easier. But calling it it high functioning makes it seem we function well... We don't.... We just hide our struggle untill we can't.

I think autism should be reserved for those with classic autism, and high functioning should be renamed. It's anything but, whilst also being completely different to classic autism.

I can totally understand your reasoning, but...

DD was diagonsed with ASD/Aspergers - told mild, high functioning etc. This led to a lack of support from school and specialists - told to just crack on ourselves.

3 years later the masking and anxiety led to a breakdown and psychosis when they were 10.

Now aged 14 they are no longer in mainstream school, on medication for ADHD, depression, anxiety. On the surface they are an intelligent 14 year old with a great life, but in reality their life is very hard.

Her diagnosis now refers to her complex needs, no mention of mild, high functioning.

It is a very difficult area - and I agree that a single term cannot cover the whole spectrum. But I think terms like mild and high functioning can be really unhelpful.

I completely agree with this. We're in the process of getting a diagnosis and I had a friend tell me that I was just being paranoid, DC doesn't have any if the signs etc. She's seen DC probably 3 or 4 times briefly in the last few years.

I also remember a friend of mine who was training as a nurse tell me that you would know instantly if someone you met has autism as it's so obvious. Said in quite a condescending tone too.

You also get people, for example, summer camps, swimming instructors that completely panic at the word autism, I think the mind immediately goes to the severe end of the spectrum.

The lack of understanding is massive and widespread. Breaking it down to different levels could be helpful.

The lack of understanding...yes....that includes you.

Agree, and some of them also want equal access the limited funds available for profoundly disabled people and their full time carers.

Just an observation from reading this thread but what’s the difference between ‘mild’ ASD and generalised anxiety/OCD type conditions?

Fundamentally is DOES seem to be the issue that people (and I guess I mean those who have autistic people in their lives and those who don’t, in equal measure) really need autism to fit into neat, easily delineated boxes, when it doesn’t. Just like neurotypical people don’t fit into neat boxes either.

I am not minimising your difficulties @Thesmallthings but that is not what I mean when I describe my son as non-verbal. He understands 1 key word in a sentence (usually a noun) and can say mummy (as an adult). He doesn’t understand grammatical words at all and doesn’t understand common words such as little. We could probably list all the words he understands on a few sheets of paper.

It doesn’t really matter because I don’t really care whether people understand my son’s difficulties or not (unless they are working with him), but it did feel very isolating before we met a bunch of people like him. The world outside our door didn’t even know what non-verbal meant.

You've just described my 'high-functioning' daughter there.

Look up the word need. No I'd rather not have help. But I absolutely need it.

Why aren't our needs just as valid?

Not sure if this has been posted already so apologies if I'm repeating something.

The issue with categorising autism is that there are many aspects to it and no one person will have the same difficulties.

So person 1 might have severe sensory difficulties, non verbal, extreme stimming, care needs.

Person 2 might be highly social, highly intelligent, severe anxiety, fixed mindset, moderate sensory needs.

Person 3 extreme demand avoidance, moderate social abilities, moderate intelligence, hyper focus on certain topics, sensory avoidant.

Person 4 socially awkward but manages by masking, stims in private, sensory aversions, considered "weird" but has severe anxiety and depression due to the pretence they are putting up.

And I could go on.

I think this idea that those who are profoundly autistic are just happy blobs who don’t really have enough about them to get frustrated and upset by their disability is just another example of people having zero idea. It was the sort of thing that added to the isolation when he was younger (parents of younger profoundly autistic children - you will grow not to care!)

Why shouldn't I access support?

It can also be dependent on situation.

You might see my son at home laughing away to a TV programme and chatting and think oh he must be "high functioning" or more offensive "doesn't seem like there's anything wrong with him"

But then put him in a new situation where he doesn't know anyone or where he's been pushed to his limit and you will see rocking, ear covering, hair pulling, crying, sometimes screaming. And most importantly unable to FUNCTION at all.