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

Which is why I said “in the true sense of the phrase…” and “The problem comes from people using it to mean other things.” You may not have come across professionals who do, but many do and that is the true meaning of ‘high functioning’.

Quite - and according to research cited in "Inside our Autistic Mind" girls and women deemed to have mild autism have suicide rates eight times the average so ...

That said I am aware that being a parent to my 20 year old ADHD & ASD daughter is not as challenging, energy sapping and traumatising as parenting a profoundly autistic child (in fact dd and I have discussed whether it would be wise for her to have biological children in future in case she has a child profoundly affected).

However despite dd's 'mild' autism it's no picnic and I can't see her living independently - she is reliant on my unconditional love and support. She will also never be financially self reliant because despite a formidable intelligence and capability she can't manage anything other than part time, minimum wage roles (anxiety & overwhelm). She overthinks everything and consequently leads a limited life. She probably won't find a life partner. I think some of the angst of understanding what you are missing out on but being unable to change things may account for that suicide statistic

I don’t understand the point of the”in the true sense of the phrase”.
”Many professionals” use it to define iq of 70+? Are they testing autistic people’s IQ routinely? i didn’t know this? Otherwise how would they apply ‘high functioning’ correctly?

I’m, so sorry @Rainbowsandbutterflies1990 . Those spaces should absolutely be safe for all children with SEN. That’s supposed to be the whole point.

By in the true sense of the phrase, I mean how it was originally defined and was intended to be used. Yes, many professionals do use IQ to define low functioning and high functioning autism as that is what the criteria were. Those with an IQ below 70 have a co-morbid learning disability and don’t have high functioning autism. Two more links to show you high functioning autism defined using IQ. The Scottish government talking about high functioning autism in relation to IQ. And the foundation for people with learning disabilities doing the same.

At initial screening there's hints someone may have a learning disability before a formal iq test is done. We ask questions about mothers pregnancy, developmental milestones, attending specialist schools. Achievement of qualifications if someone has GCSEs of pass grade it's almost certain they do not have an IQ of less than 70.

High functioning and low functioning is an outdated term and professionals do not routinely assess IQ. Many people refer high functioning and low functioning to their general functioning rather than IQ per se.

I agree, that people experience Autism differently to where people are affected by Autism very mildly (to the point where it is seen as a difference) to those who are severely impacted. Anyone who does not agree to this is just in cloud cuckoo land and are otherwise taking this personally.

I don't agree that Autism require different functioning labels.. so for example bringing back Asperger's syndrome. It doesn't make sense. The diagnostic back them for Autism and Asperger's syndrome share exactly the same criteria (impairments in sensory/routine/ridging, poor perspective taking/understanding of non verbal/verbal communication) apart from the language bit where those with Asperger's syndrome have normal language. But again, differing levels of language is not included with DSM5 (Autism diagnostic) anyway- so that's no essential in order to get a diagnosis.

Another reason why I don't agree with functioning labels is that those who are perceived as having "high functioning Autism" have an issue of people assuming that they are very functioning and physically this may be the case, but mentally and emotionally and also practically (executive functioning) may be very poor and having autism is actually very debilitative and takes away from their experience of having Autism.

I agree that those who are moderately-severely impacted should have a voice. It has come to that point that "high functioning autistics" are dominating this neuro divergent space and hence their voice speaks for the entire Autism community. They also shun parents who speak negatively of their children having autism (here as an example) and if they parents were better at reading their child's cues, placing low demands then all is is ok. The Autism is not the problem. The problem is on the parent.

@JustKeepBuilding

You have to be careful there. Having an iQ between the range of 70-75 (I think) denotes that the child has a a specific learning difficulty (I.e. dyslexia, dyscalculia) which is different than having a general learning disability.

The criteria has now changed for having a learning disability you have to have an iQ of 50 (to be diagnosed as having a moderate learning disability) and underdeveloped general life skills (adaptive functioning).

A screener does not denote a learning disability nor should that be sufficient for a diagnosis. Professionals like throwing that diagnosis around. A child has to have an assessment of their IQ to determine that diagnosis.

Learning disability and learning difficulty, general or specific, are not the same things. Although many people confuse the 2. A learning disability is a specific diagnosis (mild, moderate, severe or PMLD), that may or may not be co-morbid to ASD. You can have a learning difficulty and have a high or average IQ.

Many people refer high functioning and low functioning to their general functioning rather than IQ per se.

Which is exactly why I said this is part of the problem, people using it to mean something it’s true definition doesn’t mean. It confuses matters.

Do you have a link to back up your claim a learning disability is now considered less than 50? Because according to NICE and the NHS it is still below 70.

It's a pity that this thread hasn't been allowed to remain as a safe place for OP and similarly affected parents to discuss the issues affecting them.

Sorry I have just seen you said moderate learning disability is below 50. Of course, but there is such a mild learning disability category that covers IQ of 50-69.

ICD-10 defines 4 degrees of learning disability: mild (an IQ of 50– 69), moderate (an IQ of 35–49), severe (an IQ of 20–34) and profound (an IQ of less than 20)

www.nice.org.uk/guidance/ng11/documents/challenging-behaviour-and-learning-disability-final-scope3

A bit over mark but a learning disability is classified as having an IQ of 50-69 (mild/moderate but this appears to be used interchangeably).

An IQ of 70-75 (I think that's the cut off) denotes a specific learning difficulty aka Dyslexia.

I think the confusion lies is that professionals don't find it useful to diagnose a mild disability.. most reports now read moderate learning disability to indicate a mild learning disability instead.

I could cry with relief reading this post and people's comments on here. I thought I was the only one who felt this way.

My son is autistic. Almost no communication, almost no understanding. Learning disability, no sleep,,) aggression by means of communication, severe developmental delays, absolutely rigid to the point of sometimes feeling lost to us. I could go on forever. I adore him but life is hard.

Every single autistic space I have taken him too, every course I have done, literally everything has revolved around the more palatable forms of autism (by societies views). People who can function well with accommodations, people whose futures may involve living independently, relationships with others. Families who likely won't be long term full time carers. There isn't a moment of ANY day where every tiny thing doesn't have to be revolved around my son, even pushing my daughter who is NT at every moment.

But if you ever try to speak up about your experiences, ask for help or anything else, people will shout over you that all autism is the same, that the struggles are equal. It's exhausting and demotivating and lonely.

The push to get rid of functioning labels started for good reason - higher functioning autistic people were definitely being ignored. But it has gone the other way now where autistic people who find it harder to function are considered invisible and treated like a made up entity.

It's a pity that this thread hasn't been allowed to remain as a safe place for OP and similarly affected parents to discuss the issues affecting them.

Yes. I'm starting to think that it's absolutely impossible for parents like the OP to find their own space.
The last few pages have proved her point perfectly.

I think moderate is a really unhelpful term. Nobody seems to know what it means. DD1 attended a MLD school. I look at some of those kids now, and they are functioning well in specialist college, walking around the site independently, managing well. DD1 also has 'MLD' and is functioning so badly that she virtually has 1:1 and is on a reduced timetable and can't cope with being in a room of 9 students. She needs significant support with personal hygiene, etc. Yet her medical diagnosis is 'Moderate' (now with ASD). But she was never IQ tested, it was just her paed's diagnosis.

Erm I have worked in CLDTs as recently as 6 months ago. We definitely do base a diagnosis of LD of an IQ of less than 70 we use the ICD 10, (International classification of diseases) F70 is Mild and defined as an IQ of 50-69.

Thankyou for this post
mine is similar to yours
he is 9 but like a 18 month old
I get tired of people thinking they know what it’s like to have a child with autism when they are not profound like my Joe.
i also actually get jealous of other peoples autism experience- how mad is that?

This is what I thought, but if you read that post again the poster means you have to have an IQ below 50 for a moderate learning disability, which is correct but they fail to consider the mild learning disability category for those with an IQ 50-69.

I spend my days keeping him safe as he’s so vulnerable and any little time I have to myself worrying about if I were to die.
Its all consuming
every day every minute.

Yes, absolutely proving her point. I have no experience of autism but have been reading this thread with interest and see that it has gone exactly the way that she and others have said that all discussions of autism go. I really feel for these families and their feelings of isolation and invisibility that must make their hard lives even harder.

@Lougle

I agree and there are some Autistic children who have a co morbid Learning disability and Autism and would be deemed as very functioning. Our child developmental doctor diagnosed one of my children with LD without carrying out a formal assessment. I complained and it was deemed that he had high average IQ. They based the diagnosis on him being non verbal..

@Feefee00

I'm not disputing this but mild learning disability is gradually being faded out.

The doctors who diagnose do