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.

But it's perfectly clear from the word stereotype. You did, whether deliberately or not.

The "high functioning" autistics are the ones that people will be working with, having relationships with, encountering on a daily basis.[ ... ] those with more profound autism/autism alongside a learning disability who will continue to be understood by medical professionals, their carers and the services they access.

What is that if not a contrast between the “high functioning” and the “learning disabled” where the former get work, relationships and public life while the latter get medical professionals, carers and services?

If I have misunderstood what you intended, tell me what is the place of people with learning disabilities? Should they be visible? What should they expect from life?

I dont expect people to come across my son, or more people more severe than my son, in their offices and id have serious concerns about the ethics of a relationship beyond friendship.
I do fully expect people to see him, and more severe people, out and about doing things they enjoy and taking thier place in the public sphere and being represented on TV, discussed in conferences and within the popular consciousness of autism.

But there IS a contrast, and I'm not sure what's wrong with referring to it.

Of course I don't think that those with profound autism and LDs should be hidden away or have no expectations in life.

But will they be moving away from home at 18, trying to navigate living independently whilst studying for a degree? Will they be navigating the workplace and colleague relationships?

No, they won't. (And if they do, then they are the "high functioning" people I was talking about anyway.)

My point was that the public perception of autism is largely still based around certain stereotypes, which isn't helpful to the huge numbers of ND people who are out in the NT world. So I don't think a shift in public perception is a bad thing, sorry. I think it's really positive that as a society we are starting to understand just how many people autism affects and that we meet them in many contexts.

That really doesn't equate to me thinking that people should be hidden away or have no expectations in life.

This is a horrible thread and upsetting for both sides. I'm not even sure what the point of it is anymore. Nobody can 'win'. It seems this topic has been discussed over and over on here and always ends up unravelling with people picking holes out of each other's words and getting personal. It comes down to whether the right support is given for each individual. We should all be sticking together to get that, not arguing over which 'type' of autism should be most recognised and what counts. We all just want what is best for our loved ones, it's only natural. There is often a lot of heartbreak and worry wherever you sit in this argument. Instead of us all getting defensive, why not look at why we all have to fight so hard to get the right support and start supporting each other at least.

So I don't think a shift in public perception is a bad thing, sorry

The thing is @jaqueandjill, it is the same shift in public perception that has already led to much better inclusion and visibility for the wider disability community. It works by focussing on 'ability, just different': so 'I can run really fast even though I have one foot and one blade', 'I can dance really well by counting in my head instead of listening to the music', 'I can't do anything for myself any more but I'm a bona fide genius and will write volumes by blinking my eye.' Those are all astonishing and wonderful things and they shouldn't be overlooked because of prejudices and stereotypes.

BUT, I am honestly coming to the conclusion that these gains in inclusion come at the expense of the least able, because the least able are required for the contrast to work. The least able are usually those with a learning disability because they can't compensate for physical deficits with astonishing feats of memory or intelligence. The shift in perception is fantastic for those who benefit and increases isolation for those it leaves behind. It's a kind of utilitarianism.

If this shift in public perception for autism awareness also comes at the expense of the least able in that community, it is heaping isolation on top of isolation.

@SpookySpoon22 is probably right that this is all pretty horrid and unmanageable as discussions go. Probably I should back down and say 'yes of course my DC isn't really helpful to the cause of wider acceptance' and in real life I think I am supportive when it comes to other families trying to navigate the system to get they help they need. But my God I'm tired. And I will never be satisfied with the little pittance of a life offered to my DC. And backing down isn't going to help her at all.

This!

In Autism Acceptance week no less…

This thread is a miserable and upsetting read full of ignorance, denial of Autistic experiences and struggles and people chanting “oh it’s just a trend these days!”, “it’s all gone too far”

I have so much I to say but I just don’t have the spoons to waste on people who think because I’m married and got a degree I don’t really have Autism and I’m just trying to steal support (clue: there isn’t any) from real Autistic people… 🙄

I’m sorry but I disagree.

You have a degree and you’re married/living independently.

How can you possibly compare that to non verbal people who will never be able to live independently.

It’s not minimising your experiences to say that some others have it much more severely and require significantly more support.

Im of the opinion that of course there should be much more support available to EVERYONE with additional needs and autism but there should be different categorisations and levels implemented.

The shift in perception is fantastic for those who benefit and increases isolation for those it leaves behind.

@AmericasfavoritefightingFrenchman

But how would it increase isolation in real terms? If as a society we learn more about things such as masking and autistic burnout for example, so that workplaces can make better adjustments for their staff etc, how does that isolate your DD? My DD's life might be made a little better as a result but I really don't understand how it would make your DD's life worse.

There's one thing I know we do agree on though - Hamilton is awesome

@HermioneKipper there already are different levels of categorisation and support. A non verbal, severely affected person with autism will get enhanced benefits and supported accommodation. A person with higher functioning autism who can't work will get jsa and housing benefit only unless they are very fortunate.

@Untitledsquatboulder I said that there should be more support for all.

The discussion is about children who are all being lumped in together and it does take away from how people view autism when everyone and their Gran has it.

im sorry but it does.

my son is non verbal, has been diagnosed with ASD and leagues behind other children his age and when I have mentioned it to other parents (not routinely only if relevant) I’ve had many of them say “oh yes my son/daughter is waiting for assessment etc, when their child is verbal, potty trained and can be taken on lovely days out/to restaurants etc. I’m not saying perhaps their lives aren’t difficult behind the scenes but it’s not the same issues that we’re dealing with in the slightest and they all seem to feel that it’s exactly the same.

It isn’t

Sorry but you are being U. There used to be "autism" and "Asperger's," and that changed for good reason. There's a guy who does talks for the National Autistic Society who spent most of his childhood non verbal and was basically written off. When he got the right support he flourished and now he's a successful campaigner. Being able to go shopping does not mean you are "fine". You might still have serious mental health problems, or have an extremely restricted diet that's damaging your health.

DD is neurodiverse. She's not 'bad' but minor battles all day everyday. All low level.

I apologise if this has already been mentioned but I read that the term 'Asperger's' was phased out because Dr. Asperger was a Nazi. If this is true then yes, it's a good thing the diagnosis is obsolete but I'm not sure how the blanket diagnosis of ASD is helpful for everyone.

I have a friend whose son has ASD. He is non-verbal, exhibits violent behaviours and smears. I have another friend with ASD himself. He is articulate and peaceful but struggles terribly in social situations. These two people have very different needs but are lumped together. One friend will hear comments like 'it's a superpower though' or 'everyone has that these days', which is no comfort when you're scraping shite off the wall for the third night in a row. The other gets told 'but you don't look autistic...'.
It seems like each end of the spectrum has it's own
I do wonder if some sort of categorisation would lead to greater public understanding and tolerance. More tailored education and support.

I hear ya Roberta. My DD is in her 20s, is autistic, goes to Uni, but still struggles daily. Gets told she doesn't " look autistic ", and even got told she couldn't possibly be autistic because she appears to function and mostly does till something happens.
I have ADHD, and got told similar, because I'm not bouncing of walls...🙄

I know the following 19 children from school. They are all in year 5. None of them have any diagnosis, yet look how each child has their struggle. Not autism but my point is that no child is 'normal'.

1. Can't wear trousers due to sensory issues

1. Can't have anyone say happy birthday or sing happy birthday due to anxiety issues.

1. Can't be in assembly due to loud clapping.

1. Can't regulate emotions during PE and playtime.

1. Needs to use fidget toy to focus.

1. Doesn't understand personal space.

1. Doesn't know times tables

1. Can't write

1. Can't read

10. Hides in small spaces when stressed.

11. Constantly day dreaming.

12. Struggles in large groups.

13. Lack of inner filter.

14. Can't tie hair up due to sensory issues.

15. Struggles to eat.

16. Needs to be told of any changes to routine.

17. Cannot start tasks independently.

18. Hates PE due to being overweight.

@ukholidayseeker wow, 19 children have been assessed for ASD and none of them received a diagnosis? That's so unusual

AmericasfavoritefightingFrenchman

”The least able are usually those with a learning disability because they can't compensate for physical deficits with astonishing feats of memory or intelligence. The shift in perception is fantastic for those who benefit and increases isolation for those it leaves behind. It's a kind of utilitarianism.”

What are you talking about? You clearly know very little about the struggles experienced by those who are verbal and have autism. Often we have other neurodiverse difficulties such as adhd and dyspraxia to go with the autism. Working memory difficulties are common not amazing memory or intelligence that just counter acts the autism.

The ignorance on here is just astounding particularly when it’s used to spout nonsense and devalue autism by those that don’t even have it themselves.

ukholidayseeker
What is the point of your post? Are you inferring autism is on a par to just not being able to tie hair up?🤔Many children with autism will be able to tick off many or most of those( my child included) just one of those can completely overwhelm and have an impact on life. Imagine what living with all of it at extreme levels alongside covering it up and being disciplined for not fitting the norm , not coping with differences, learning difficulties, memory problems and chronic anxiety, sensory and repetitive urges day in and day out is like. It’s exhausting and hugely damaging.

My daughter did not have a diagnosis in year 5 and was just dismissed as being a bit different. It has nearly killed her. She now how has 3 x diagnosis, full PIP, an EHCP and a massive amount of support from services having spent most of the last few years out of school and in hospital.

There is no way 19 children in year 5 would have gone though the diagnosis process.

Covid pulled everything to a standstill and waiting lists are currently over 2 years. No way would 19 children have been picked up and gone through the process by year 2 even before things were so dire.

There's one thing I know we do agree on though - Hamilton is awesome 😁 Yes! Agreed! Thank, you, you made my night. I think @MrsMariaReynolds was on this thread too so that makes three of us.

@jaqueandjill read your post again. Do you really think that all our children with more profound autism/learning disability only deserve to be 'understood by medical professionals, their carers and the services they access'?

It is because our children (and I caveat that DD1 is verbal, does walk, etc., so is not even as profoundly autistic as some on here) are so isolated from society that they can't access services - they don't exist. DD1 can't cope with being around other people. It means that I can't really take her out. She doesn't cope with group respite sessions, so again, doesn't go. She needs 2:1 support if she goes out at college, they've decided, so they just don't take her. She stays behind with an LSA while the others in her class go out.

The public need to recognise all the versions of ASD. All of them. Our children are not just to be hidden away so that society can stay in their comfortable bubble.

I really dislike these posts it reads like "who has the worst autism" it's not a competition. If you had a physical disability there would likely be a range from minor to major and treatment/support would be given accordingly. It should be the same for people with asd. Some may need some reasonable adjustments so they can thrive and achieve at school, work etc. Others need more complex support and may never work, have relationships etc. But even though the first group have the potential to lead a relatively'normal' life that would be because of adjustments made by their parents, school etc that's enabled them to thrive and develop own coping mechanisms. Without that understanding and support their life would look completely different. Surely if that was your child you would want them to have that opportunity.

My ds has asd and developmental delays. He currently attends mainstream with 25 hours of 1:1 support. He excels in some areas of education but is significantly behind in others. He does not have friends. We do not no if he will manage secondary school or if he will ever work. He thrives because of the scaffolding home and school create without that he would be extremely stress/melting down / lashing out and would not be able to access his education or attain. It's so hard to get support as we all know. There's already a lot of Sen children getting excluded from school and put in behaviour units because they can not cope and schools do not have funding /training to support them. What do you think those children's outcomes are going to be? It's frightening that the government are looking to take that funding/support away completely leaving so many children and schools even less able to cope. And children getting disciplined for things they can not help, being told there is no reason for their issues essentially being set up to fail.

I don't know what my sons future looks like but I'm grateful for the support we have that is giving him a chance. I can not understand any person who feels children deserve any else.

I agree, in an ideal world all versions of ASD would be understood by the public and society would feel comfortable with all.

I'm just talking about a shift in perception, not for those with profound autism to be forgotten. At the moment I believe the public understanding is limited, largely confined to stereotypes of maths geniuses, trainspotters or someone banging their head against the wall all day.

So I could turn the question back to you, do you think that our children with lower support needs only deserve to be understood by medical professionals etc? When it's entirely probable that they and the undiagnosed outweigh those with profound autism? And they are trying to live within a NT world without support or understanding? I'm sorry but no. Society needs to recognise what that kind of autism looks like.

So does she have childhood dementia? Brain injury? Dyslexia? Epilepsy? Very high IQ? Learning disability? Developmental Coordination Disorder? Developmental language disorder? Foetal alcohol spectrum disorder? ADHD? autism? Genetic condition? Nutritional deficit? Dyscalculia? Sensory impairment? Sensory processing disorder?…

All ‘neurodiverse’. I dislike the term, not because I don’t think it is helpful to consider a wide range of ways of thinking but because it doesn’t. People like to use it as a synonym for ‘autism’ or at a push autism and adhd. Everyone else is labelled ‘neurotypical’ when clearly they aren’t.

I’m certain that things will evolve further - think about the step changes in autism knowledge over time - remember within most of our life times it wasn’t even a diagnosis.

but carers won’t be driving that change it’ll be medical professionals.

Similarly this discussion is mostly us reflecting partial representations of autism in the media and as we’ve said other disabilities have this issue too.

People at large are at fault too - we all want to switch on our tv and watch uplifting things for the most part. Even documentaries are creating uplifting narratives.

I thought it was good when the separate diagnoses collapsed tbh because I can see similarities between how my kids behave when they aren’t regulated/aren’t coping and any other child with an autism diagnosis, and that the campaigns should cover everyone - but I can see from this thread people don’t share that. And I can certainly understand that there is a huge care difference between someone who has periods where they can’t cope and the day to day unending struggles some are facing.