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.

My son has a diagnosis of Asperger's, and I think, although the link to Hans Asperger shouldn't be celebrated, it does make it easier to distinguish I guess

I have 3 dc with ASD.

My eldest is 17, and is at a specialist ASD school. Has been in specialist school all the way through, will go to a SN college. Has learning disabilities, as well as ASD. Will not live independently - always needs help, supervision and guidance.

middle dc is 14. Can get about mostly independently, with preparation. Eg could get public transport to meet friends, but would rather get a lift from me, but I could insist on the public transport, and dc would be able to manage it after a few tries. Can definitely go shopping g/for lunch/out socially with friends, and is sensible, safe, can budget etc. will absolutely be able to live independently, but might take a bit longer to get there.

youngest dc is a bit of an unknown. Is bright, social, sensible. But has mental health issues already (age 11), and it’s difficult to tell whether will be able to live independently. Should be able to, if teen years go well enough, but can’t definitively make a call either way, really.

they are all autistic, but their needs are diverse. I’m not sure the ASD label that unites them means anything, really. They have the needs they have - younger 2 don’t have EHCPs, ans wouldn’t get one without a massive fight that isn’t worth it. They are both in schools that support them well, so we wouldn’t gain anything from the EHCP necessarily. Eldest wouldn’t have managed any sort of school without an EHCP. Eldest gets enhanced PIP for mobility and daily living, younger 2 don’t get anything.

I don’t think the number of people with SN increasing, due in part to better awareness, means that everyone will automatically get less support, or that one person’s needs will be overlooked for another’s, because the needs are not the same. There are different ways of meeting the needs, depending on what is required.

@MWBE if you read my post - I offered advice to these parents and also was asked for it.

What is your concern exactly? Is it that funding will be diverted from the more extreme end of the spectrum? Is it that people won't understand your sons struggles? Have you tried saying "severe/extreme"? Do you feel comfortable with that?

Nope but I do think there should be something.

I see your point of view and your concerns.

I’m also carrying some of the enormous damage of being a middle aged woman who wasn’t recognised as ND.

And my daughter is pinging on my radar now with little hope of any help or recognition because she masks so well in school.

Meanwhile her db who has the more obvious manifestation of autism siphons all the sympathy and attention.

But supports, not so much? It’s a bit of a joke really. 6 weeks here and there of this and that delivered by earnest women who have disappeared and moved on before there’s any follow up which in any rate it’s scheduled years apart.

My sincere hope is that the more people who are identified and diagnosed, the more voices and advocacy there will be and the better things will become right across the spectrum. Right now it’s too easy to dehumanise people. I see it happen right in front of my eyes every time I’m out with ds anytime someone dealing with him knows he “has autism”

I think it’s a positive thing Op.

I have a child with autism. Those that need to know how it affects her get told. Family, friends, medical professionals, education settings etc. It doesn’t matter that others hear autism and don’t know what exactly that means for my child, it’s none of their business. Anyone that matters will understand that autism is a spectrum and affects people differently.

Sorry buy yabu. If you read the new diagnostic criteria, there are levels so 1, 2 , 3 . These replaced the old terms. So there are ways to differentiate between those on one end of the spectrum to the next.
Clearly these girls are being affected in some way by their potential autism , in girls especially they can suffer burn out from masking , usually in their late teens / early 20s. So the girls you see today who appear to be high functioning, may not be so in a few years time. If diagnosed, their diagnosis is just as valid as your sons and they deserve support to function too.

i don’t suppose you know where I could find the criteria or what search would bring up the right thing? Thanks.

I have high functioning autism, my son has lower functioning autism like your son they sound very much the same - probably won't live independently etc.
I totally agree with you. I feel a lot of people are taking support away from those on the "lower" end of the scale. I think everyone's entitled to a diagnosis but it's scary to think the system is massively overwhelmed.

There are children and adults who are able to live a normal life with an autism diagnosis.

Fixed it for you OP:
"There are children and adults who are able to live an apparently normal life with an autism diagnosis, and their struggles and difficulties aren't as apparent to outsiders. Meaning that they get dismissed, which compounds the issue.

I do understand your point but coming from a family with a number of neurodiverse people in it (some of whom were diagnosed as children,some who have never had a diagnosis)the challenge for those apparently living “normal”lives is that they’ve ended up in mental health crisis at various points.my child has ended up with an adhd diagnosis only after a couple of years needing mental health support after some serious issues…now we know what is behind that we can make plans and get support …albeit privately as most of this group of people are not having their needs met through the NHS either.adequate support for children like yours at the severe end of the autistic spectrum has always been diabolical but even more so nowadays.

You are not being unreasonable in the slightest Op. I think with the drive for more understanding of autism and especially in its presentation in girls the awareness campaigns often represent a suggestion that autistic people only need a tolerance of quirks to be accepted and to be facilitated to function in society. I'm thinking of a few adverts I've seen recently as part of autism awareness campaigns. This focus fails completely to highlight autistic people who are not seen in society at the samectine as raising awareness of possible features of autism that people may see in their children.
Chris packham did a 2 part series recently on autism but I feel did a reasonable job of showing how isolating and how much of a disability it is for some people.
I'm glad my child was diagnosed 2 years ago with Aspergers at age 5. We were told it was changing and would be used interchangeably with autism but the official diagnosis is Aspergers. I feel this gives an immediate suggestion that the child is verbal and likely able to function to a degree in society.
I hope my child will live independently but she has other additional needs and along with aspergers leave her extremely vulnerable.
In contrast I also have to stress that she is autistic to her school so they remember that's why she makes no signs of making friends or being aware of how to do so. She now is comfortable to a degree around others but is constantly on high alert. She has never requested to play with friends because others are not on her radar. She needs to have the suggestion made to her and she usually says no . I feel she will struggle with communicating with others more as she grows and I fear that her difficulties will not be realised jntil too late as is often the case with girls.
But I still think an Aspergers diagnosis is appropriate for her.

Friend stoped using autism to describe her son with severe needs. She now says he has severe needs or severe learning disability

High functioning or whatever the correct term is won’t get benefits for it. But it will help them understand themselves as they grow older, rather than struggle with relationships and a whole range of things.

How will one child who can’t speak or do anything for themselves lose their funding because another child finds it hard to maintain friendships? Yabu

You're really patronising. As if the OP hadn't already said that she was try to be careful about how she expressed herself and was worried about it coming out wrong, not only do you put the boot in, but like a total prat, you try to tell her something she already knows.

I do see what you're OP, but I think it's a waste of energy. There are 4 of us in our family, all being kinds of ND.

From the outside, I think most people would think we have one autistic child, and the rest of us are "normal". The reality is that we all have different capacities to mask, emotionally regulate etc etc.

I honestly don't know which is harder. The child the got dx relatively young, or the one who flew through the first years all social and high achieving, who finally crashed when the teen hormones hit, and has since battled with full blown OCD, ADHD, major depression.. now being investigated for other things too.

All those things were there, in moments, but looked manageable.

Anyway, as someone who managed to mask her way through an extremely successful life until about 40, and after 10 years of completely unravelling.. I'd rather everyone got looked at, and even over helped (because we know that happens ALL the time!), if it means that we end up with less dramatic outcomes long term.

Good luck with your son in the future. Not knowing what degree of independence they will manage is a chronic anxiety, which makes joy hard.

I do realise that three out of four of us have the capacity to fool most of the people, most of the time. On balance, I'd say that's the blessing, however much I'd like to be accepted just as I am.

This is interesting. My son is Autistic, diagnosed by comprehensive MDT assessment. Hes only 4 but he does appear to do really well in social situations, and people often use this as an excuse to say hes "got good Autism" or is "lucky hes not severe", or even commonly to question if he is really Autistic. . And i understand in comparison to others, hes not visibly "severe". But in order to get his haircut i spend weeks building up to it. We walk past the hairdresser. She comes out and says hi etc etc. Then hes PERFECT in there. The minute we get back to the car he loses his shit completely, screams all the way home then completely shuts diwn and sleeps for hours. This is the same pattern with most social interactions. So you cant presume that these girls being out with friends means they dont have difficulty; who knows what it took to get them there or what impact it has later.

I don't feel you are being unreasonable. My 9 year old girl has just been diagnosed and we (and school) wondered for years about whether to arrange an assessment as she functions well in many areas, but obviously has her struggles in others. It is not comparable to the challenges your son has and part of me feels guilty about her diagnosis.

I see your point about this and there clearly needs to be some distinction made. However, I know 2 people who have reached adult life and to the outsider probably look like they have been successful, being married, holding down a job or in one case a successful career. Both have however struggled due to their neurodiversity, leading to mental health problems, issues in the workplace, bullying, and problems socially. Recognition of their issues would have helped both them and others around them, I think. I guess our priority needs to be the most severely affected. Those who can manage should be helped if there is remaining resource.

You're entitled to your opinion but my feeling is that, as much as the OP claims she isn't, she's actually being very dismissive of the struggles of other people. Which isn't uncommon at all, when it comes to neurodiversity, and also mental health, and chronic conditions such as arthritis, and women's health issues like endometriosis. We see someone just about holding it together on the surface and dismiss their very real struggles.

This.

And people like OP decide your child is living a normal life. Why can’t they just see that they just don’t know it all because they see a small snippet of these kids lives.

yes, the downside of a lot of these campaigns about people talking about their autism is that they rely on verbal fluency.

for anyone with girls - school is not your only access to nhs diagnosis. Go to the GP if you’re getting ‘their fiiiiiine’.

a lot of us can both understand the problems you’re outlining whilst also thinking the solution is not to restrict diagnosis so that those of us that can, can make better choices.

I realise this is just an example, but there's no need for a 4 year old to go to a hairdresser. Why don't you just cut it yourself, or leave it long?

Lucky you that your son was diagnosed early. Girls can mask and have for years been missed only to fall apart in later teens. We now know autism can present differently. My daughter could put on a mask and try to fit in with other girls, she still fell apart at 15 and has needed significant support from services. She now has the autism, adhd and dyspraxia diagnoses and should have had at 5.