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.

I have a non verbal nearly 13 year with autism and learning disabilities,tbh, his autism diagnosis is unhelpful on a day to.day basis ,as he is so far removed from the people you hear or read about ,he mainly say he has complex needs ./ Disabilities.

Please remember autism in girls in massively under diagnosed.

They've changed the criteria on one part of the country. I'm expecting it to be rolled out to the rest. The threshold is scary

A lot of kids are going to fall through the net who really need support.

Your list of reasons don't make any difference really. My whole crowd have a variety of ND people in it. Live alone, run houses, do work/college, have social lives. Some will never leave their parents or love independently. I don't think my son will tbh but that's fine.

You can only see the world through your own parameters. All kids who are struggling deserve support, whether they can be diagnosed with something or not.

I hear what you're saying OP and there was a long thread about this recently - someone more capable than me will be able to link it. But very much the sentiment on that thread was that your feelings are not U at all.

I agree, I think they need to bring back the diagnosis of Asperger’s.

No, they really don't.

DS is 9, we're waiting for assessment. But for a long time I had a feeling that something wasn't right, but the school insisted he was doing fine socially. Then he wasn't anymore.

I can understand why you feel the way you do. But for perspective - my DDad had a small melanoma on his shoulder. It was cut off and he had to apply some cream. On his medical record it shows that he had cancer, because he did. His symptoms being minor and his prognosis being excellent doesn't change that it was cancer. Pretty much every medical condition comes with a huge range of severity. Like the difference between my friends broken leg - a few weeks in a boot then good as new - to mine - multiple surgeries, pain, swelling, nerve damage to the point where I am debilitated.

It isn't that you are being unreasonable, it is just that the diagnosis of autism has become so wide as to be somewhat meaningless. I'm sure someone will be along to tell me that it is additional learning difficulties etc which make your son's life so different, rather than the autism itself. But myself I feel the diagnosis of Asperger's was useful in differentiating between groups with totally different expected outcomes.

I had no idea any of my 3 had ASD. Until Covid hit and I was around them so much more. Dd is 17. Can manage to meet friends.. Every other week. Weekly is too overwhelming.. She can eat out with friends but at home has a plate with carefully organised foods.. ASD is a minefield...

As you say, it's a huge spectrum. You hope your son will work one day, i know mine never will.

It's a tricky one as on the one hand there are many children who fall through the cracks of diagnosis but would benefit from the support it brings (although that's often lacking isn't it), but there has certainly been a shift in some parents wanting an explanation for what are actually regular variances between children. I do think some have lost track of what are regular emotions, responses to situations and feelings etc and seek a label for their child. The answer isn't I don't think to heighten the threshold to be assessed but perhaps to yes have some different criteria and broaden the levels within diagnosis.

I see why some do it but I hate those who aim to speak for everyone with autism saying it's not a disability and minimising it for others.

I don't think you are unreasonable on your feelings but YABU to dismiss the other mothers. I have asd as does one of my daughters. What would have been called HFA and it impacts my life every day but wouldn't know unless I told you.

It's a spectrum for a reason.

I think I hear what you're saying, OP. I have been wondering about the massive increase in the numbers of children with SEND diagnoses.

Of course autism is a spectrum, and I guess that very many of us will have some degree of some of the criteria that may lie on the spectrum. But that doesn't mean that we have autism.

I do feel that many of the milder presentations of what is currently being labelled autism really just deserve to be considered as part of the spectrum of "normal"!

If a majority of people end up with a label, how can a label-less minority then be considered "normal"?

(I have a close family member with moderately severe autism. Never lived independently, never will. I do have a fair bit of experience in this field).

I see your point. I have a non verbal autistic child with complex needs. The chances of him ever being able to go shopping with friends or even play a sport are extremely slim. There is such a wide range within the condition that ‘autism’ just doesn’t seem to cut it. I don’t know what the solution is though.

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.

My Dd went shopping at 12 and 13. It was about age 14 she began to stay in. Now she’s 16 and never goes out apart from school. She’s got an NHS diagnosis

I see what you're saying. DD1 is 17 and can't be left alone, goes to special college, high rate PIP, etc. But DD2 (15) also has ASD and although she is much more able than DD1, she also now goes to an independent special school and her ASD causes her significant difficulties. DD3 (13) is awaiting assessment and although I'm mainstream, her difficulties are causing issues with getting in to school, etc.

I think that a focus on the needs of the child, rather than the condition that causes it, would be the best approach. That way, everyone gets support for their needs.

Yanbu

I read a lot around autism/AS as my brother has it and I and other members of my family show huge traits of it albeit without the issues he has so I don’t do anything about it. If your child shows that they have any issues that may make life more difficult for them, of course you’re going to try to figure out what their issues are- at the moment I’m jumping through a zillion hoops to try to figure out issues with my son’s hearing. If it was something to do with how he is socially or with his mh then I’d have been one of those parents too. Your son has something that’s obvious, their children have something they can’t put the finger on. I know to some people that’s taking resources or the like, but to them it’s trying to figure out how to stop anything going too far (and my brother was only diagnosed as an adult when he started talking to himself, banging his head and making noises where as a child he’d just have been seen as slightly odd (but still amazing!!!))so it’s valid for people to try to figure it out as it plays out x

Bear in mind none of these girls has been diagnosed.

I'm very high functioning and would not have joined a football club or gone shopping with friends. Plus I had 2 very obviously neurodiverse parents.

I guess it's a bit like a lot of medical terms - eg. Cancer - you can have it mild or severe

I hope he will. I'm not saying he will - I have no idea.

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

There are many children who suffer so much worse than my son does - I'm well aware of this. This post is in support of your son too!

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'

Why do you think your son's diagnosis would be 'exactly the same as those girls'? "Everyone has autism so it's nothing" is directly contradictory to 'it's a huge huge spectrum'.

Oh 100%. I'm well aware of this. It's really not about that though. It's just that the spectrum is so huge that there are those who can live a relatively normal life and those that can't - yet they are all diagnosed with the same 'condition'.

I have a very verbal autistic son with complex needs, I don’t know if he will every work or live independently. It’s now a case of saying “he is autistic with complex needs” and roll out his EHCP for Y14 which states clearly he will need wraparound care and support as an adult.

I am also autistic but diagnosed in my 40s. I have a degree, hold down a full time job etc. There is a world of difference, in fact my diagnosis was Asperger’s which I think they might now call “neurodiverse without meeting all criteria for autism” but am not sure.

it IS an issue and YANBU to be concerned, particularly as many very verbal and able autistic adults have started to police terminology and therapies.

interestingly they would take issue with my autistic son saying “I have autism” which is often his chosen terminology. Instead he should say “I am autistic” apparently. No I don’t correct him as how he describes himself is his own decision.