Special needs parents - am I unreasonable to think this way?

[user1188]

You can tell me if I am.

Background - my son is 15. Diagnosed with autism when he was 5. He has an EHCP, goes to a specialist secondary school where he gets transport every day. Gets DLA - HRC, LRM. Not able to do anything independently - never been anywhere alone. Never even been to a friends house without me there.

Im hoping he will be able to work when he's older however I doubt he will ever be able to drive or live independently. Im not putting him down here, Im just being realistic for the purpose of this post.

There are a lot of children in the same position my son and this post relates to all, not just him.

I also have a daughter who does not have any additional needs and she plays for a local football team. The mums of the football team recently went out for lunch while the girls went shopping in our local shopping centre. There were 11 of us in total. Apart form 1 mum (my best friend) I barely know the others other than saying hi etc at the matches.

So we are all sat at a table in the restaurant and the talk turns to autism. 4 out of 11 of these mums thought their daughters (who play football) were on the autistic spectrum. 3 of these were on the waiting list for cahms and 1 of these just beginning their journeys. Another mum was trying to get her son diagnosed while another mum thought her son had adhd. 1 of these girls already had a diagnosis.

This meant that including myself, 8 out of 11 parents either have or could potentially have a child with additional needs.

So I began asking them why they think their child has autism/adhd. The majority of answers were they just felt something was 'not quite right' with their child. They then mainly spoke about lack of support from school or the waiting times to get appointments.

Please be aware that I am not shaming these parents. I don't know them well enough to make any judgments. I am not saying that these kids are not autistic or do not have adhd.

But what I will say - 4 of these kids who are possibly on the spectrum were currently shopping with all their friends. They are social, they have friendships, they are independent, they can keep themselves safe. These girls are 12. My son at the age of 15 can not do anything of these things. Yet he would have exactly the same diagnosis as these girls.

I know autism is a huge huge spectrum - I get it completely. But I worry for my son and others like him - the more vulnerable ones. If autism becomes such a common thing to have - what about the most vulnerable? If Paul cannot live a normal life yet Adam, Jane, Julie and Pete can - will Paul end up with a lack of support because 'everyone has autism so it's nothing'

I may have worded this all wrong but after a premed consultation this morning with my sons teachers, we got on the subject and they also share my worries.

@teacakie that's very sad to hear. Best wishes to your daughter.

My youngest has selective mutism through is not on the spectrum.

My son age 18 is almost none verbal severely autistic with severe learning difficulties and will never be independent.
My daughter age 9 is on the pathway for an asd diagnosis.she is academically able and very very,independent and has a very advanced vocabulary BUT out of the two she is the hardest to parent and has the most meltdowns due to people not understanding her needs !
Seems strange that the high functioning one has a harder time but as the saying goes "if you're met one person on the spectrum you've met one person on the spectrum " as they are all different.

I work with severely autistic children. All are non verbal and have multiple behaviour problems aswell. They will never be able to be without a parent or carer. I do worry that funding will become so stretched due to all the less challenging cases being diagnosed. The ones that really do need the help may not be able to get it in the future. If your child is happy at school and can socialise with friends why would you push for testing ?

If it helps, why not? My autistic DS disagrees with you. He'd like it back, and yes Asperger worked with the Nazis. Langdon Down was a giant racist. Wanna change that too?

shutthewindownow

”I do worry that funding will become so stretched due to all the less challenging cases being diagnosed. The ones that really do need the help may not be able to get it in the future.”

What are you talking about. A diagnosis doesn’t mean you get help. It’s just a diagnosis. If you need help you need help regardless. Also the type of help needed would differ.

I don't know, I'm not a psychologist and not even sure if that term is used in diagnosis. Why?

Yeah. I got this attitude at a local autism "support" group from a woman there. Her son was diagnosed young therefore is obviously significantly more autie than my late diagnosed girl. Of course we'd pushed for years, she's made attempts on her life but just because her autism doesn't look like her son's autism then as far as she was concerned we were taking up HIS space. She might seem sociable to some. You don't see the impactful things though. I swear this is a sort of misogyny.

Ok children that are lower on the spectrum then?

@AnorLondo ok children lower on the spectrum then?

Wasn’t used in any of our diagnosis.

I have the exact same worries. I don’t think combining Asperger’s and classic autism under the same umbrella helped.

Diagnosis is still graded it's just what was asperger's is now considered level 1. Sounds like your son would be graded level 2.

So not the same diagnosis, technically.

https://www.cdc.gov/ncbddd/autism/hcp-dsm.html

itsakindoftragiccc

No it isn’t.

I got my NHS diagnosis this month. No grading just a statement saying I meet the criteria for a diagnosis of autism. Came in a very thorough, detailed and useful report. Dc had the same.

That link is American and stupid as my Dd has fitted into each of those categories.

It's from DSM V and it's literally the diagnostic criteria.

I was about to say!

Your child has gone from being assessed as normal IQ to having learning disabilities over the course of a few years???

The diagnostic criteria includes severity levels.

Sorry that some of you disagree, but this is the DSM V definition

https://www.autismspeaks.org/autism-diagnosis-criteria-dsm-5

Your child has gone from being assessed as normal IQ to having learning disabilities over the course of a few years???

No, no she hasn't. That's not what I said though...

Aware of that but the link does not point out that

“people who receive a diagnosis are not automatically eligible for support. DSM-5 explains that ‘severity’ levels may vary by context and also fluctuate over time, that the descriptive severity categories should not be used to determine eligibility for and provision of services, and that 'these can only be developed at an individual level and through discussion of personal priorities and targets.”

National Autistic Society

DSM-5 is not commonly used in the U.K. and I was diagnosed using ACIA and ADOS anyway. Would be very difficult to give a grade as you will score differently in different areas and overtime as the NAS point out.

You did; you said She would have been put in the HF/not severe/Asperger's box at the point of assessment. Just a few years lasted her autism would be considered severe, classic, low functioning..

High functioning and low functioning refer specifically to IQ. Individuals with normal or above IQ were referred to as ‘high functioning’, whereas those with learning disabilities were referred to as ‘low functioning’. So for your daughter to be considered low functioning would mean she was assessed as having learning disability.

Low functioning autism means low iq. That is the definition of it.

Then that's my mistake.

Remove low functioning from my post, the point remains.

So, because a child is less challenging that means they don’t need support? What a load of tosh and I would expect more from a supposed ‘professional’!