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

My 11yo was diagnosed last year, they said in the past it would have been an aspergers diagnosis.

I don't think it's helpful for either her or children with profound autism to be grouped together under the same diagnosis. Their lives are going to be completely different.

DD definitely has support needs above those of NT children and life is challenging for her (and us) but I can't begin to imagine how difficult and relentless it must be for parents of children who are profoundly autistic.

I don't mind thinking of her autism as mild. In the scheme of things, it is. I do think there should be some separation of terms, especially with so many people now getting a late diagnosis or self identifying as ND.

Yes cognitive assessments are part of the autism assessments

I work with severely autistic children in a special school. Think non verbal, developmental delay, behaviour issues, self harm, etc..

I always think of the parents. Life must be so, so difficult. I know parents who have had to put their child in full time care homes because they just cannot cope at home. People who haven't experienced this just have no idea. Working with these children in a school is hard enough, and we have high staff ratios and someone to always support you/come running if you need help. To be at home alone with a child who is climbing on the furniture, completely naked, breaking things, hitting you, pulling your hair, screaming, absolutely zero understanding that what they're doing is wrong...

It's a very different picture to what the mainstream media paints of autism, or what a lot of people think autism is. I do think it would be helpful to have different wording for it.

@saraclara I completely agree why can’t we have a thread to discuss the experience of caring for a severely autistic child?
If people are determined to argue re definitions of autism can’t another thread be started? 🙄

To be fair the SEN boards would probably be a better place for that that AIBU which by its nature will invite debate

@PennyRa

Cognitive assessments are not part of a Autism diagnostics.

They are part of autism assessments

They weren’t for DS. Other than asking school about how he presented there no mention of his academic ability was made

The spectrum is wide for autism.

The impact on parents life's is massive for high end.

I just wish they get the support they need.

The support group shouldn't be taken over by the low end functioning group.

The ones who just been diagnosed as adults and want the world to know.

When you were with the doctor they played games right?

No they are not @PennyRa

A child may have had an educational psychologist assessment distinct from the actual Autism assessment. But no, a cognitive assessment is not routinely assessed on those who are undergoing a diagnosis and is not part of the diagnostic procedures. Paediatricians just like to throw that diagnostic label around without carrying out any cognitive assessments. It's lazy in my opinion.

Since the diagnosis was changed to encompass all under the ASD umbrella formal cognitive assessments aren’t so much part of the assessment process now although more informal judgements are still often made (not always correctly), but under the previous criteria a judgement of a person’s cognitive profile was often made whether via formal assessment or informal judgement (not always correct) to inform which diagnosis was appropriate.

Maybe they are just lacking in whatever part of the country you are from.

Ds had an ados assesment. That doesn’t look at cognitive function. It looks at social emotional and play/imagination

@PennyRa

I am in the UK and if that was the case then at least state where you are from as this is not the norm in the UK. I know it's not nice to be told that your wrong. But a cognitive assessment is not routinely assessed during diagnostic procedures for Autism. Some doctors base this on developmental history, current presentation of child needs and provide an informal learning disability diagnosis based on that. A child has to have a cognitive assessment to determine LD's or not. Basis a diagnosis on Informal measures is just lazy and harmful.

My ds is very low functioning with low IQ but because he can talk, he has so far been preventing from the SLD schools.

He can't cope in MLD because he needs more support.

He need s support with toileting, eating and personal hygiene. He is regularly awake during the night for long periods and self harms when he is upset.

It makes me so angry that because he can talk, he is excluded from accessing the help he needs.

I have two other sons with ASD and while it makes life bit tricky at times, it is NOTHING LIKE having a severely disabled child.

I'm not sure where you are in the country but our Autism assessment department is ran by psychologists , Nurses , OT and SALT. A consultant psychiatrist wouldn't generally lead the assessment process unless there was severe MH issues as well.

The arguing about how autism is diagnosed on this thread is really not necessary... It doesn't add to the original conversation of what OP was trying to discuss

In England. I know in some parts of the country they are worse at autism assessments. I'm sorry if you live in one of those areas

I'm not sure where you are in the country but our Autism assessment department is ran by psychologists , Nurses , OT and SALT. A consultant psychiatrist wouldn't generally lead the assessment process unless there was severe MH issues as well

I know that @Feefee00. An Autism diagnostic assessment is multidisciplinary and just includes all the professionals. But none of these professionals can clinical diagnosis a learning disability. A clinical psychologist is usually the lead of these types of assessments alongside other clinicians but during diagnostics of Autism, they do not provide a cognitive assessment - only educational psychologist does this. Also, not all clinical or educational psychologist can diagnose learning difficulties such as dyslexia, this requires an Ed psych who is trained at using diagnostic tools to diagnose such learning difficulties.

You might as well talk to the wall. People are reading posts like yours and completely ignoring them.

I imagine that OP have up on this thread long ago, and is feeling even more shit than she already was.

My post above was for @Cupofteaaa5 . For some reason the quote function didn't work

Couldn’t agree more @Cupofteaaa5

I'm hoping OP saw a few of the posts from people in similar situations who were feeling the same way. I'm not quite sure how they can band together in a space to share some highs and lows and let off steam together. A little bit of 'noise' from the mild/severe/function debate is easy to filter out, but probably not this level. I do feel bad responding to one question about what severe high functioning autism would look like as it added to the noise. I think readers can take from this that it is indeed impossible to just have a space to vent and share. As even though i was really supportive of this aim, i still got sucked in to responding to something else once. Anyway I hope OP isnt feeling shit and saw some solidarity from a few people.

Going back to the OP and other posters, I think the hardest thing is the not knowing. When DD1 was small she was uncontrollable. I had to stack two stair gates in her doorway because she could climb over one and it was more dangerous than none. Then we had to attach a piece of wood underneath to stop her slithering out the bottom of the gate. We had to use electromagnetic locks on the doors because she would climb over the stair gate on the front door and escape near to the road. We had to use a harness when we were out because she had no sense of danger. But she was largely happy if getting her own way. Meltdowns were containable because she was small. As she's got older she's become far more complex. Nobody can tell us if she'll 'grow up' any more. She's 17 and acts like a young child. She can't be left at home but can't cope with going out. That means we don't get to go anywhere either, unless she goes to my parents. She was hospitalised two years ago with an eating disorder. We still see the psychiatrist 2 years later, and she's no better, really. She's heavier, but the issues haven't improved and she's yo-yoing between a reasonable weight and underweight. The psychiatrist doesn't know what to do with her. CBT won't work because of her cognitive challenges. She is hurtling towards adulthood and it's very worrying. But, she is verbal and she is continent.