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.

This isn't about comparing children on who has the 'worst autism'!

But you literally compared different children with autism in your OP? Saying how those girls can do things that your son is unable to.

What is it you'd like to see?

Forgot to say - my parents would have said there was absolutely nothing wrong with me, as I was exactly like them!

Same for my DH and his parents. So neither of us would be discussed by our parents.

I think something I’d note is that unmanaged ‘minor’ needs can end up spiralling into major needs. My sister was just about able to go out with friends as a teen, if dropped off and in a supportive crowd.

However, later on it escalated further and further. It was the pile up of needs vs mental health. She did end up inpatient for years and an adult that isn’t able to have an unsupported independent life. Partly mental health, partly skills topped out in the real world, disability outside school is harder etc. It really went wrong, partly it was the masking collapsing. Partly the skills gap growing from her peers, partly expectations rose and she could t keep up. Partly it was being dismissed, her mental health collapsed.

No one wants this to happen, hence trying to seek help before it really becomes unmanageable (if possible!!!). Partly it’s looking to the future, knowing how much support you are offering right now.

I understand and sympathise OP. I was so mentally unwell I was sectioned once, it took me many years under daily care to recover. It’s difficult to listen to others claiming they’ve suffered for years with their mental health at times, if I am brutally honest. I am absolutely not trying to take away from their experiences or call them liars, it’s just that it somewhat dismisses what I went through with mine. It truly shouldn’t feel like that, but when they go on to say how they had to put on a stiff upper lip and just “get on with it”- for me that wasn’t the case or I’d never have been sectioned. There are people who exaggerate their experiences for personal gain and it’s hard when you feel judged or suspect people think you’re doing that yourself.
I wish you and your family well. ♥️

You’re making assumptions by what you see them doing , you don’t know what they are like at home or do you know if they are struggling at school . Girls are really good at masking. Your be surprised how kids change tho .

My dd never had typical signs of autism, was showing signs of not liking noise at 6 . No one picked up she was autistic, I just felt something wasn’t right , when she was in year 1 she was just so far behind the rest of her class . She Managed well outside and in social situations .She was diagnosed at 9 , She’s now 13 and can’t manage going outside at all ,can’t even get on public transport without having a meltdown. when she was younger she never had a problem with it . she flaps her hands a lot where she didn’t before . She now goes to a special school , where before went to a mainstream school . My ds I knew was autistic from 2 . However I do kinda get where your coming from

Well I have in that sense to get my point across otherwise my post would be completely meaningless! There are children and adults who are able to live a normal life with an autism diagnosis. Yet there are children and adults who have the the same diagnosis that can't - and I worry greatly about these.

I can't comment on autism specifically as I don't have a child with autism. However I would say that your opinion also fitted the narrative on mental health issues. Everyone seems to have anxiety, depression, bpd and other mental illnesses these days - either self diagnosed or diagnosed via services which also seem to be lowering their threshold.

I was diagnosed with Asperger's ten years ago when I was 33 - a diagnosis which perfectly described my condition and abilities.

I am a senior professional with multiple degrees, have been with OH for 20 years, own a house, drive, maintain a social life / friendships / family relationships etc - my 'lived experience' of autism is, as you say, very different to that of a non-verbal autistic person with severe learning disabilities and additional needs etc. Nonetheless, we are both classified as autistic with no nuance.

Autism is described as a spectrum condition, but it's more complicated than that: most people will visualise a spectrum as a line connecting two data points - in this instance, let's say 'high-functioning' (i.e. me and people like me) at one end and 'low-functioning' at the other.

Autism, however, is better described as a profile - but that takes quite a lot of explaining and TBH, I can't always be bothered being a teaching moment for people.

While I do welcome increased awareness of autism - especially in women and girls - I do worry that a 'blanket' diagnosis of autism is insufficient to describe the highly varying complexities that autistic people (and their families) face.

I'm afraid I don't know what the answer is.

ASD as a diagnosis is getting a lot of focus but care needs already allows for differentiation as said the last time it was discussed. Nobody that knows anything about autism is going to tell you that your son is like their child that has lower additional care needs and most of the programmes about autism recognise that there are many different levels of needs within that diagnosis.

Maybe they were clumsily trying to be inclusive of you rather than minimising?

Thought provoking post OP. My DD20 is not autistic but has such severe OCD that she is like your son - unable to go anywhere alone, no independence at home or outside the home, no real function in activities of daily living. I suppose the difference is that she appeared to be entirely "normal" until she was 14.

OCD is vastly trivialised and misunderstood, but again is on a spectrum - some people have aspects of it and go about their day to day lives and you wouldn't know and then there's a very small group like my DD who are completely disabled by it and prognosis is poor - they may never achieve any functional independence. Because there are so few people with such severe OCD, I joined a parents support group where all the other kids/young people have autism, but again "limiting" autism, mostly housebound or unable to leave the house alone. We feel we are all in the "same boat" albeit for different reasons.

I see a few posters including OP have said they are not sure what the answer is, and someone asking there "what would you like to see" - I don't have the answers either but I feel that YANBU.

YABVU. You accept it is a spectrum. It means any one person can suffer all or very little effects of it. Just because they don’t fit the complex experience YOU have of the spectrum, doesn’t mean they aren’t on it. They may come to have their own challenges in life as a result which you shouldn’t minimise because you view those challenges as less significant than your own.

It’s like saying a wheelchair user who has COPD is less disabled than a wheelchair user who has no limbs. There is always a medical spectrum and a diversity of complexity within it.

I’m sorry your son has a difficult life. It must be hard on you and I hope you both get the support you deserve.

No I absolutely don't and I've said that. I'm not saying there parents are wrong, I'm not saying that these girls are not on the spectrum at all. I've been clear when I've said that. I gave all the advice that I could give them. A couple were asking about going private in order to get quicker diagnosis but I couldn't offer any advice on that as Ive not been there.

I get your point, autism is so large a category that it is making it more difficult to communicate the depth of the problem for those who have it very seriously. My friend with type one diabetes says she feel that every time somebody tells her to try to reverse it. What do you think the solution is, though?

Remember to the stats on girls with autism around sexual abuse, eating disorders and mental health - they’re dire. The Christine McGuiness documentary showed that. Even if they function, if they don’t get the right level of social help they are looking at some pretty horrendous ‘outcomes’

Absolutely. I'm trying to get careful in what I say. I knew I would get judged and it would open a can of worms but again for the record - I'm not minimising these girls in my daughters football team for a second.

@user1188 I have only read your opening post so far. I have a secondary-aged DC diagnosed with a 'learning disability' who sounds very like your DS in terms of ability - certainly in terms of current support. We are just now grappling with the idea that there may be autism which has gone undiagnosed largely through being deemed irrelevant due to the learning disability.

I completely understand your concerns for your DS (and my DC and the others who are most vulnerable). I think it is already the case that the progress in disability inclusion has been made by focussing on being 'differently able' - which means in practice that the least able, those with learning disabilities for example, are still excluded.

If ASC as a diagnosis swells to include those who have masked successfully for half a century and those who would previously had the diagnosis of Aspergers as well as those like your son and those with co-morbid learning disabilities, it is easy to see that the focus, the funding, the awareness will again go to the most able within that group. It's easier, it's shinier, it's more uplifting for everyone else to do that.

I don't know what the answer is but you have my sympathy and solidarity.

Yes I should of pointed in my op that I absolutely realise that girls are much harder to diagnose. But it wasn't about that, I was just taken back that over half our table have or possibly could have a child with additional needs. That's a lot.

I'm sorry but you're yabu. But unfortunately many girls fall under the radar because they mask. My dd being one of them but she was diagnosed at age 12. I knew something wasn't right from age 3 but people just said oh she's ok, she can do this that and the other. I suspect some boys can too but it's mainly girls. That's not to say they're right about their children but I do think a mother's instinct is strong.

Would using "severe autism" work for you?

I agree with you and I understand the concern on attention and funding - it shouldn’t be that way. Dh and I have talked about a lot of oxygen going to incredibly articulate kids describing their autism, which we found hard to relate to at times.

it’s partly the fault of the media and how they like to portray things too and people wanting to tell and hear uplifting stories

I feel what we’re seeing is an educational model that isn’t working, school pastoral support that’s largely absent and a post pandemic low point in how kids have developed all tied in here alongside some much needed increase in diagnoses.

I'm in Scotland and pre-pandemic - 30 percent of kids needed additional support for learning at some point - surely that’s a sign the education system huge huge problems?

Ditto school absence stats - 28 percent of secondary schools kids have absence rates 10 percent or higher (England according to recent Times article).

If you understand it’s a huge spectrum, then what’s your point? This is just another goady thread saying the same thing that all the others do. ‘Everyone has something nowadays’ type bollocks. The answer is to educate and for better support for all to be in place.

Thank goodness their parents are trying to get them diagnosed because that’s the only way of getting any support ime. I don’t think that’s what you want to hear though is it?

🙄

No you are misreading my point entirely! I know that girls mask - I've said this. This is NOT about the fact that this particular group of children are girls. This is not about saying that they don't have autism.

This is about the fact that they may well go on to lead a good solid life. I know these girls are doing well academically. They clearly have good friendships and are trusted by their parents to go shopping at the age of 12. Again - I'm not saying that they don't have autism. They could have a meltdown when they get home because they masked that whole shopping trip. I get it. My son also masks. He's very good at it. We all know our children and what their needs are.

Yet there are some children out there that are completely non verbal. Their parents have never even been able to have a conversation with their child. The spectrum is that huge. Yet these kids have the exact same diagnosis as your daughter. It's these children that I'm concerned about - it doesn't matter wether they are male or female. It's about how autism affects their lives on a daily basis and what the future holds for them.