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.

ASD is a disability. The D stands for Disorder, implying that something is not working.

If you’re not disabled by your ASD you don’t need to get worked up about it. All it means is that you don’t have ASD.

@WilsonMilson autism is recognised as a disability under the Equalities Act 2010.

I get what you’re saying but autism isn’t a one fits all type of thing. But I understand what you mean. The spectrum seems to be so wide that people expect you to be the furthest end almost all the time when you mention autism. But that’s not the case.

And autism in girls can present really differently & they are more likely to mask their traits.

If you’re not disabled by your ASD you don’t need to get worked up about it. All it means is that you don’t have ASD.

Quite.

If you meet the criteria for a diagnosis you also automatically meet the definition of disabled.

Opinions are not needed, just stick to facts.

But what is the diagnosis adding in terms of accessing supports if it tells us nothing about the need for specific supports?

And there is also a drive by some in the online autism community to say that any therapy undermines a child’s authentic autistic identify. That a child shouldn’t ‘be made to’ have eg speech and language therapy but the world should change instead. That they shouldn’t receive social skills support, etc. Which ignores all child development. These voices are very dominant in some parts, along with heavily policing language. So it is not just the ‘Nasty Tories’ that are an issue. Nor is this just UK issue - DSM is American and ICD is international.

Huh? Is it not?

@WilsonMilson why would you question whether it's a disability? I very much doubt people with "quirks" "mild traits" are given the diagnosis.

I personally wouldn't have got a diagnosis if I wasn't disabled by it. Don't think I know anyone who got a diagnosis for the fun of it.

Equality Act 2010. No such thing as Equalities Act. Autism is also not ‘recognised as a disability’ under it. Few conditions are named by the act (cancer, HIV and MS if I remember correctly). ‘Disability’ is defined as You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

Part of the problem is this. We can all agree that we should protect the most vulnerable whenever possible. The most vulnerable should get their needs met first, not just the loudest or the pushiest or most insistent. BUT, if we insist that everybody with autism is equally vulnerable, the number of vulnerable people becomes too big for them to all get their needs met at once. So we are back to meeting the needs of the loudest or pushiest or most insistent from within that group - who will not be the ones like OP's DS.

My mother is a speech therapist who works mainly with autistic kids. She has the whole gamut. From the nonverbal, completely dependent types, to the ones with mild learning disabilities, but otherwise capable of an independent life, and everything in between.

It is different. She works with them differently, depending on their needs.

I dont think anyone, particularly in the health field has any doubts that autism presents very differently from person to person.

and that some people have much bigger needs than others.

Just like a PP said about cancer. Some people have to have chemo, others not so much. Did they not have cancer because of it? Of course not. They just had a different type of cancer and prognosis.

@OP I totally agree with you. Don't know what the answer is though and these discussions have to be worded ever so carefully (as you have done) otherwise you will get immediately jumped on and discussion shut down.

It's getting to the point that to be autistic is now the norm rather than exception.

@Shelefttheweb

‘Disability’ is defined as You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.

And if you have a diagnosis of autism you fit that description.

When you say ‘mild traits’, I think you perhaps mean ‘subtle traits’.
A lot of people have an issue (rightly so) about the term mild traits/mild autism.

I agree

Guys, I misspoke and apologise for that. I asked for my post to be immediately withdrawn as soon as I hit post, before anyone even responded to me.

I think there's truth in this in that the diagnosis encompasses an enormous range and it can lose its meaning. Having the Aspergers diagnosis helped to differentiate (its yikes history aside)

My brother is really profoundly autistic, he can't speak at all and will spend his life in care. I work in MH and many are diagnosed with ASD who go to uni and have varied social lives. They do have ASD and rightly need the right support, but the huge range of abilities the diagnosis covers makes it difficult to talk about my DB. I wish there was a word to convey how disabled he is without needing to describe it each time, it's tiring.

@Shelefttheweb this is an interesting point. For me, the main issue in getting a diagnosis for DS is that provision can be made for reasonable adjustments through school and work, which will be very specific to the individual, especially when they appear to function well superficially. Having bumped through 42 years undiagnosed, I now see I could have held down the ‘big’ professional jobs I burned out from if reasonable adjustments had been available. Instead I tried to force myself into the NT mould and made myself mentally and physically ill trying. I want to spare DS that and to preserve his mental health and self worth.

@WilsonMilson 👍

It was life changing for me.

Not sure you should have typed your last line but the fact that so many children (and adults) are being diagnosed surely should make us wonder….what environmental factors could be making those changes?
What one thing increased worldwide in the 1980’s….something that almost every baby born receives from the government.

Do you also think being sexually attracted to the opposite sex is a disorder and disability? The same manual used to diagnose the autistic way of being as a condition/disorder is the same manual used to diagnose homosexuality as a mental disorder into the 1970s.

If society got it wrong that homosexuality was a disorder, they might also be wrong about millions of autistic individuals.

Autistic people are first and foremost people. As an autism specialists in HE the ones I see that are struggle are those with MH issues, ADHD, abusive childhoods etc. There are far more autistic individuals who have no support needs compared to those who have.

@Shelefttheweb - negate when the doctor makes the diagnosis. They don't just say "you're autistic, don't forget".

It is a long and wide ranging report(or should be), and within autism there are levels of impact, numbered 1, 2, and 3.

All of this should provide other health care professionals, and teachers, and anyone who really needs to know, a lot of indicators as to what this one unique child is dealing with.

It's not "that broad". It's only a vast pool of confusion because everyone is trying to compare everyone.

If you'll just worry about the child or children in front of you, it really is no trouble at all.

The trouble is randoms. People who have opinions that MUST be shared. About how autistic or not your child is. About how they GET it because their nephew is autistic. Although he's PROPERLY autistic because he can't talk. Or the teacher who has been on a course, and says they know all the things.

Which doesn't help the teacher who actually sees her kids as individuals, and is desperately trying to assimilate 5 different kids with extra needs into their class..

Yes, but you don’t need to have the diagnosis.

Thank you. Appreciate this post.