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.

It still stands that there are some amazingly intelligent autistic people who will go on to have amazing careers and somehow cope with very little help. If these increase (which I hope they do!) I worry that society will think THIS is autism we you and I know it isnt.

But that is autism. Not all autism, but it is autism.

Which is why myself and plenty of others oh this thread believe that autism diagnosis should not be so varied. Everyone on this thread has a right to their child's diagnosis and I would never even wish to take that away.

These two sentences seem to me to contradict each other.

Well I guess I'll just refuse all support and flouder then, since I apparently am selfishly taking away from those who are more deserving.

Anyone who think that somehow the interests of different autistic people are fundamentally counter-posed and we need to fight over the scraps is missing the point.

Nobody gets a clinical diagnosis unless they have support needs and their lives are significantly impacted.

It's a spectrum and it's dimensional. There are no meaningful generalisations available. Support needs need to be tailored, as no-one's needs are the same.

Anyone with significant needs deserve for these to be met in a civilised and inclusive society.

The real problem with this thread and OP's question is it assumes some groups of autistic people need/deserve to lose out in order for others to get what they need.

Choices other than robbing Peter to pay Paul are available.

Lots of superficially high functioning people (let's be honest - this gets used to describe kids who 'look normal') have comorbidities that mean they may never be able to work, drive or cope independently in some social situations. Some autistic people without learning disabilities smear, and are violent towards their caregivers, and can't go out and do family things or take holidays, or travel independently, because of crippling anxieties.

This 'they look fine' narrative really needs calling out as bllcks.

That would be a daft decision.

Seems to be what you are suggesting.

@jaqueandjill I think you're really asking and not just posturing so I'll try to explain what I mean.

Firstly I'm really glad if your DD can have better support, better self-knowledge, better adjustments. That's great for her. And no of course she's not physically taking something from my DC or actively making her life worse.

But isolation and understanding are about perception and visibility and ubiquity or rarity.

So for example the average NT person out in the wild learns more about autism by watching documentaries with Chris Packham and Christine McGuinness and this expands their view of what autism can look like. And they're a decent person and mostly want to be inclusive and so they take on board the message that people can be struggling and masking in daily life and might need adjustments. So they might be a bit more considerate, or not just immediately take offence at perceived rudeness, or put themselves out to have a conversation with your DD on her own terms. And actually that will be quite easy and cheap for the average NT person to do. Christine MccGuinness for example, despite the effort she revealed it cost her in preparation, came across as a much nicer conversationalist than Patrick. I bet your DD can be an engaging conversation partner sometimes. It certainly seems like your neighbour hasn't seen anything 'offputting' to stop him from treating your DD like any other neighbour. If he learns that she has struggles in fact he may well think, 'what a shame that Jill Jr struggles, she seems like such a nice normal girl, I'll have to make extra sure to be a good neighbour'. Lovely. We might question the language but the sentiment is good. The NT person goes home feeling good about themselves - they did the 'hard' thing of including someone, they even quite enjoyed it. Disability seems less scary and just a part of life. It's not perfect but it's a strong foundation to build and improve from.

But none of that teaches anyone how to interact with the most profoundly affected people. I'm not necessarily here talking about non-verbal people who can use alternative means of communication to put across complicated ideas but it might include them. To do this you need specific skills - eg makaton sign, PECS; and you need practice and exposure - eg coaching to give the person a loooong time to respond, coaching in how to slow down and simplify your language. (To be fair to Chris Packham he had a decent go at doing this in his recent documentary despite how obviously outside his comfort zone it was, so he gets a lot of respect from me for that. I don't think that little snippet out of however many hours of documentaries was a sufficient proportion of the discussion though.)

The average NT person though, is really clueless about profound disability. It's not something they see or experience often or ever. They don't know what is being asked of them in relation to that person, or how or where to learn the necessary skills. It's scary and unknown, and also didn't they just do their bit for inclusion when they had a coffee break with Jill Jr or Christine or Lafayette, for that matter, on Tuesday and got to understand her better? Their work is done!

In terms of what people like my DD need to be accepted in society, we are asking people to compromise and adjust much much more, and we are asking them to accept a model of disability that doesn't really fit the 'ability, but different' model they've been hearing about for so long. So I think it needs proportionately much more effort and visibility. So the shift in perception towards the more obviously able is a shift further away from my DD and those like her. She is less visible, less understood, less included.

The other thing that happens, which is more of a problem for me as a carer I admit, is that people form falsely optimistic ideas about autism that don't apply to DD and pick up what is to me jarringly unrealistic terminology. So they will ask me what my DD's superpower is, which enrages me. Or they will press to know what she is best at, what her latest accomplishment is, which embarrasses me to know how to answer because she can't even write a sentence but she has been having a lot fewer toileting accidents. (That's not what they're ever expecting to hear.) Or they will tell me not to give up hope because look at that new professor in Cambridge who was non-verbal for years, but they can never give me a hopeful example of someone who actually did have a severely low IQ rather than someone who's profile was hard to quantify. Then I'm in the position of saying to them 'actually no, in this instance disability is worse than you thought, autism is worse than you thought.' Which is upsetting and off putting to others and doesn't fit the narrative.

Goodness that's long. Well done if you got this far.

(In the back of my head all morning I've been catching myself trying to fit "Jaque and Jill" into the lyrics of "Guns and Ships". 'Jaque and Jill and so the balance tips... Hm not quite right. Try it somewhere else.' In case you wondered what it's like inside my head.)

I think the terminology and the need to educate about how big the spectrum is comes into play here.

the belief in ND people having "superpower" is an old stereotype, most people are not "savants" and if they are if refers to them having some talent that compared to their other abilities appears to be much more developed (and likely develops further because people tend to focus on things that they feel talented in).

On the flipside - those who may seem like they're coping just fine may struggle in some everyday tasks and get even more criticised for it because "why can't you just do it if you can play sport/work/go to a mall"

Thanks for your reply. Where you say this

The average NT person though, is really clueless about profound disability. It's not something they experience often or ever

is kind of my point - the average NT person won't be experiencing profound disability often, but they will be encountering autistic people like my DD all the time. So that's why I welcome a shift in perception, because although the average NT person may not have a clue about what life is actually like for somebody with profound autism, or how to interact with them, I think if you asked most people what autism looks like they would describe something closer to profound autism than to somebody like Christine McGuiness. Yet it's people like Christine McGuiness who they will be coming into contact with far more.

I hope that makes sense without sounding awful. In an ideal world there would be visibility to both. The documentaries have been interesting but would perhaps be better if they showed more contrasting types of autism alongside each other. I did find the non verbal man on the Chris Packham one opened my eyes - I have to admit that I was clueless that somebody completely non verbal could be so eloquent in their thoughts. That was genuinely educational for me.

As for Guns and Ships...I have no idea but it's now going around in my head. Quickly.

If they were proactive they would save money. DD2 was in mainstream. I begged for support for her. I could see her dissolving. They gave almost no support, other than adding her name to a list of kids with SEN. She then completely fell apart in year 10. Now, the LA is spending £90,000 per year for her independent special school place, and have agreed to put her back a year. Might have been avoidable if they had put things in place to support her in mainstream.

@Lougle totally agree. Our LA is currently dragging its feet about funding a 1:1 TA in mainstream for my eldest. It will be massively more costly to them if DC ends up in a resource base or specialist provision instead. But they seem just focussed on saving money right now.

In Ds case things started to really implode in yesr 3, he had an ehcp but it wasn’t worth the paper it was written on. Thankfully we fell very lucky with his school who were very supportive and helped us fight for full time 1-1 and a very clear well written ehcp. Not without issue but he managed to happily finish primary school and is now in year 8 at mainstream with full 1-1. It’s not been an easy road but at the moment he is managing.

we are just at the point of fighting for sensory OT and Mh provision via his ehcp because what is available via nhs isn’t enough. If we get that in place we are hopeful he should be able to manage for now in mainstream.

If we hadn’t fought for the level of support he has now then the only possible option for secondary would have been an independent specialist or more likely a tailored EOTAS package - both of which would have cost a lot more than his fully funded mainstream provisions.

to many children are left to get the crisis point before any support is put in place and then they need a lot more support so at a much higher cost (both financially and mentally)

Council’s are generally pretty short-sighted and worry more about this year’s budget. Costs which can be deferred generally are - especially if they are likely to fall due after a local election.

Ok, I hear you @jaqueandjill. I can understand what you're saying and of course you want your DD to be understood and accepted.

I think, if it's any encouragement, that she will be. I think it is maybe not as big an ask as you imagine. I have spent a long time in a work environment where, actually, the majority of us were ND. That was accidental, it was just the place that suited me best. Now I look back and can see more clearly why it suited me and many of my colleagues. But I think there are already places where your DD would be readily accepted and there will be more by the time she is grown up.

I hope you'll bear with me though if I say that part of your argument does still sound a bit awful. The bit where, if I'm understanding you, you're saying that because people don't experience profound disability often, it's not as big a priority to tackle perception of profound disability.

My argument would be that until we tackle perception of profound disability, those people will continue to be excluded, and society will continue to say that they are not visible and so not the priority, on and on for ever. This is also what frightens and upsets me for my DD.

I think if you asked most people what autism looks like they would describe something closer to profound autism than to somebody like Christine McGuiness.

I think this is the crux of the issue with the stereotypes we mentioned earlier, Rainman etc., because these tend to feature the idea of the redeeming 'superpower'. So I don't think the stereotypes are helping my DD much more than they're helping yours.

I did find the non verbal man on the Chris Packham one opened my eyes - I have to admit that I was clueless that somebody completely non verbal could be so eloquent in their thoughts. That was genuinely educational for me. That's really interesting to hear. I do think we are coming at this from completely different starting points - being totally honest, I was jealous of that man on my DD's behalf because she can't name feelings with accuracy, let alone form an argument. I'm afraid that she never will be able to externalise her thoughts. I don't know how to help her advocate for herself when all the models I've ever seen involve revealing unexpected eloquence.

In an ideal world there would be visibility to both. Yes absolutely. Yes please.

It's not just the most severely autistic that miss out on relationships, friendships, having a family, having a job.

It's hell to be subtly incapable and unwanted.

@SillyLavish you're right. I've always said that DD1's biggest problem is that she knows she has learning disabilities. She knows that we never leave her alone but she doesn't quite understand why she's unsafe to leave alone. She sees her sisters, who are younger than her, but who can stay home alone, go out if they want to (DD2 doesn't because of her own needs, but could if she wanted to/felt able to). She is able enough to know that she's not where she should be, but not able enough to realistically know her limits, or do anything about it. So she still thinks that she might be a vet in America. She thinks she might adopt children. She thinks she will drive a Tesla when she's older.

@AmericasfavoritefightingFrenchman I've been thinking about your posts a lot today. Whereas I definitely do want a raise in awareness of how autism looks for people like my DD, I really don't want that to be at the expense of those with profound autism. And I get what you're saying about society already saying they're not visible and that just being perpetuated. I think I've fallen into a trap of thinking that people already have an understanding of what profound autism looks like and now it should be the turn of people like my DD. But of course it's all based on stereotypes and yes the superpower shite winds me up too. No my DD doesn't have a superpower and her autism isn't a superpower, it's a disability. Let's call it what it is.

The more I think about it the more I realise that we need increased visibility of all types of autism. Those recent documentaries didn't even scratch the surface really. Even my DD who by all standards would be considered very "high functioning" struggles a lot more than any of the people they featured were portrayed to (I know that they will too, but it did seem to be reduced to single issues like I can't cope with noise or I can't cope with change). It wasn't representing either of our DDs.

Thanks for your thoughtful posts and helping me think it through.

No, you're wrong, not everyone has "mental ill health". Everyone has periods where mentally, they aren't at their best, but no, everyone does not suffer with being mentally ill. There is a difference between feeling down, feeling anxious about things etc and having depression, having anxiety etc. Just like feeling feeling tired because you've been been extremely busy/had disturbed sleep isn't the same as having chronic fatigue syndrome.

Unfortunately attitudes like yours are common - not understanding the difference between going through rough patches in life and actual mental illness.

Thank you so much @StressedToTheMaxxx . You articulated this so well. This is the problem precisely that EVERYBODY now thinks they have "mental ill health".

Yes @Nimrode as a mental health nurse, it's a bit of a bugbear of mine!

we have two Autistic teens one is able to make friends, drive and get about independently but the other is unlikely to ever be able to live on her own. She has failed at college twice and had had to give up. She spends most of her time in her bedroom unless we take her out. She has no friends at all. So they are all different.

@Lougle , your daughter sounds a lot like mine , she is 13 , autistic and has always attended a special school .she thinks when she is older she will create comics , or be a film director! The reality is she has learning delays and anxiety, she also thinks if you take a class in something, you automatically become amazing at it , it’s really tough .

I have a family member who still lives at home and receives 30 hours support a week. His “friends” take advantage of him for money and he either doesn’t see or is so desperate for friends he doesn’t care. He’s aware enough to know he’s different but can’t set realistic limits and lacks insight. He says he wants no support because he feels he doesn’t need it (he does) and wants to move out and work full-time. In reality, he struggles to keep on top of his personal hygiene, manage a budget, spot when someone is lying or taking advantage, etc. He’s put metal in the microwave and will wear winter clothing in summer, to name a few examples.

I know another lady who lives in social housing and works two days a week in a cafe that employs people with LD or mental health issues. Some weeks she finds it hard to get to work but they’re very understanding. Recently she’s talked about getting a mortgage and working full-time. When her parents questioned it she became so angry and defensive.

Both see themselves as stuck in a system that’s holding them back.

I also know people who are desperate for extra support because they feel they aren’t coping, but MH professionals are reluctant.

I honestly think it’s all about insight.

OP I broadly agree with you and I’m sorry you’ve had such push-back from some posters who seemed to want to twist your words.

DS1 is ‘right in the middle’ in terms of severity. I’ll probably be told off by someone for using the word ‘severity’, but this is the issue - which words do we use to describe our own child’s needs within such a vast spectrum? He attends a special school and specialist sixth form college. He’s very verbal but has hyperlexia and I think this extends to the way he speaks - he can sound like he understands what people are saying to him, but he’s actually parroting them - and this, among many other things, makes him extremely vulnerable. He’s nearly 18 and takes his teddy bear with him everywhere he goes and can’t cope without him. He doesn’t go anywhere at all without human support as well as bear support. I think he will manage some form of part-time job, but we’d have to find an extremely understanding employer. He won’t live completely independently. Because his disabilities are nowhere near as severe as some others with autism, he won’t qualify for assisted living - so he falls into a grey area in terms of his future. It bloody terrifies me.

The word ‘autism’, to me, is a bit like the word ‘freezing’. It’s freezing when the weather hits zero degrees outside. It’s also freezing in the Arctic at -40° or whatever. The two levels of cold are so so different and yet (as far as I am aware) there’s just the same one word to describe them. I see the variation in autism similarly.

@CatkinToadflax I am just so glad that at least a few people are as confused as I am regarding what is now considered Ill Mental Health and I'm a strong MH advocate. I no longer understand what people mean when they say my dc has ..you know..'mental health'. I have no idea what they are talking about.

Are we talking about a young person going through a rough patch because their BF/GF dumped them?, 'anxiety' because 'exams are coming up, in both cases mental health will resolve itself naturally as soon as those two situations have moved on OR are we talking about someone like my DC who has an anxiety disorder from infancy which means he struggles to eat incase he vomits, will not touch certain surfaces, has echolalia and motor tics? they've all become bundled up into one category and I find when I talk about the challenges we face day to day someone pipe up about their dc who is of the former category.

No doubt someone will pop up to say it's all a spectrum and just because we have 'challenges' doesn't negate the other person presents differently. It seems impossible to explain to these people that there's a difference.

Hi @Nimrode your son sounds in some ways similar to my 18 yr old DS, in that his autism affects him quite profoundly but not quite enough to trigger perhaps the kind of support that might actually be really helpful (assisted living for example). Like you, I worry about the future - how he’ll cope when we aren’t here. I try push it to the back of mind but more and more I’m thinking of it.

I really like your analogy with the freezing temp thing.