Autism

[lolly07766]

I know there are many threads concerning this subject, I've just read one now.
I have a son with severe autism, limited communication and obvious learning disabilities, aibu to think the diagnosis/description should be changed for high functioning people, as opposed to those who have serious disabilities.

Great Pepsipepsi your struggles aren’t anywhere as near but my children’s’ are- because it is a spectrum.🤔 Like many they wouldn’t fit in any category.

More people are "getting a diagnosis " because recognition and assessment has improved. Are you saying people who function differently to your child shouldn't be classed as autistic? There's a risk if they start splitting autism in groups not everyone will get help and support. But tbf there are a lot of children be failed by the system anyway. I'm not sure what the answer is as often in society when people hear the word autistic they write a person off as unable to function where as as u say it's such a range. But I also know as an autistic person I mask a lot so can seem normal but I'm not really. We do need to break down the stigma around autism and stop pressuring autistic people to be normal.

One thing that frustrates me with these discussions is the negative impact they have all around as they turn into a race to the bottom rather than a chance to realise that even if the issues faced may be wildly different to have an autism diagnosis then the individual is going to have significant struggles even if you can’t see them.

you can no more assume the non verbal young person is happy because they are unaware (non verbal doesn’t mean non thinking!) than you can assume that someone who externally appears to be living a “normal” life isn’t impacted massively by their own diagnosis and the struggles it brings.

even if you where to subgroup things it wouldn’t improve support or understanding, I actually worry it make things much harder. Ds and dn are both autistic and if trying to group would probably end up squashed into the same box but in reality they are both impacted very differently to the point that often we can’t even have them in the same room as they can’t cope with each other

I agree OP. My partner wants to be called someone with Aspergers and doesn't like the fact he is now considered someone who is simply a high functioning autist and therefore has additional/level 1 needs (he doesn't feel he does). He hates the fact that he is put with the same condition as a doubly incontinent, non verbal, high needs child, when he is an articulate, high IQ, sensitive man.

This is the first time I've ever heard of these categories so perhaps it being more widespread in articles or on the NHS web pages would help spread understanding both in the ASD community and wider.

Those levels are really offensive.” Minor difficulties”.😡

I’ve never seen them either. Where on earth have they come from. I’ve just got my diagnosis and not seen them, my daughter had hers last years and no mention was made of them either.

Yes i did. Firstly I did the AQ autism test online and scored 44 out of 50 next I went to gp explained why I thought I was autistic. I was given some forms to fill in. Then referred to autism team for assessment.

My child was diagnosed with aspergers age 5. I find it much more helpful when talking to people who need to know saying aspergers. Ime they tend to immediately correctly infer from this that she has difficulties but is able to function in life. Her difficulties are not visible to most, but she is autistic and does struggle. To the trained eye watching her in school it is obvious she does not relate to the world around her in the same way others do. It remains to be seen how she will manage through school.

The issue with this tends to be other objecting to people using level 3. Or taking about themselves having days or situations when they are level 3 - so completely missing the point of these categories. On a great day, the best day, my son still needs 24 hour 2:1, cannot leave the house alone & cannot order himself an apple juice in a shop. There is no moving from level 3 for him and it is that which is meant by level 3.

A lot of people just use the ‘profound’ term now anyway to distinguish. Most autism specific groups/activities are not accessible to many with level 3 autism so the autism diagnosis does not meet their needs. There is very little public understanding of what profound autism means in terms of support needs. Accessing medical support is incredibly difficult and often actually impossible. [things my son has not been able to access because adaptations needed by him not available: A&E, emergency GP appointment, covid vaccination, blood tests that he should have annually to check his horrible medications aren’t doing any damage, EEG, ECG, dentist],

Are you talking about children who have a diagnosis or parents who say they must be autistic due to behaviours . Autistic children are not badly behaved anymore or less than non asd children. The issue is when an autistic child melts down due to sensory overload/overwhelm, the adults need to recognise what went wrong unfortunately they often go for the easier option of punish the child. Autistic children need help and support so they can function in society . If this is in place melt downs/negative behaviours will be less frequent.

I literally just saw from another poster that 3 categories are used. I had never heard this before today. So yes a spectrum but also more defined using subclasses. So subclassifying autismn must be a medical tool - how widespread the knowledge is known and used, I don't know.

I'm Level 1 needing little support (eg for communicating clearly). I know someone who is Level 3 and when I was growing up in the 90s this what everyone around me thought autism was. There no support for the quiet daydreamer chronically shy girl who got sneakily bullied when the teacher wasn't looking, because her homework was always turned in on time immaculately.

As I said my heart goes out to those struggling with Level 2 and 3. It's not something I could cope with and I wish there was more help for you all.

They were introduced when Asperger’s was removed as a diagnostic category.

However, they are not used as much in the U.K. because they are part of DSM which is more of an American thing.

If we are going to lump all the autisms together (which we shouldn’t imo) then there does need to be some way to distinguish between need

Thank you that is the clearest description I have heard .

Do you mind me asking what happens next after a diagnosis? I've never gone down that route because there's no magic cure so for myself I feel it wouldn't improve my life significantly. What actual help is available for "high functioning" autism?

This level system is not being used. It is not a medical tool. How could it be? Myself and my children could flit between the three. I’ve just had my diagnosis. It was very through and a level system was thankfully in no way used. Ditto my children. It just wouldn’t work.

Thank goodness the U.K. sees SENs ds’s. Well my children are high need and get full PIP. They are not non verbal and go to school but could fit in to any of those categories.

sense not “SENs ds’s”

My son’s autism and intellectual disability are all part of the same condition. There isn’t an autistic part of him and an intellectually disabled part of him (or a savant part of him - because he has that as well, some really quite extraordinary abilities) - it’s all just his one brain leading to all of it. One condition. According to the geneticist probably due to a single gene mutation that arose in him.

I wish you all the best @Ca1mingC1arySag3 I hope you and your children get the support they need. 💐

It's the same with everything. My dad has epilepsy as does my cousin. Dad's epilepsy is controlled, he drives, works, etc. They can't control my cousin's epilepsy. But they're lumped in together.

Given that there are so many symptoms, how would you categorise it? You're either ignoring the difficulties "high functioning" people with Autism have or you're ignoring the strengths people with "severe" Autism have.

None !!

Absolutely nothing. I was advised to contact a local adult group and social services. Local group is inaccessible because of my noise sensitivity. Social services won't have anything to do with me because needing more than 30 minutes notice (they mentioned something about an appointment 2 weeks previously but gave me no more contact details or a time. I planned something else) for something and not liking crowds makes me "awkward".

My son has autism. He is very bright and he is verbal. However, he has struggles with communication which results in panic attacks and severe anxiety. They have diagnosed him with ADD. He has severe hyper mobility, possible DCD (awaiting diagnosis) and he struggles with writing.

Every person with autism presents in a different way. Each person has their own challenges

@lollipoprainbow @SouthCountryGirl well that was my fear/expectation that there is no support. And yes the idea of going to support groups with social anxiety has always made me laugh derisively.

I'll just keep muddling along with my learned coping mechanisms. What the heck people with greater problems supposed to do?! (rhetorical question)

This tells you nothing . By your description my D’s would be level one and some days it is.

yesterday was not. He struggled resulting in head of year been involved, as well as teacher, numerous emails and the evening from helll for both of us

my D’s has good days but days where he might physically be able to do something but completely overwhelmed and needs more support. This is the issue why the he doesn’t look autistic comes in because he masks his struggles till he can no more.

it isn’t mild it’s different.