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 totally understand.my adult son is autistic and had adhd.he is also profoundly deaf and had other illnesses.He has never been diagnosed officially with autism or adhd -mainly because there was no such thing as adhd when he was a child-but considering our gp gave him a pre med for sleep so at least I could eat for a few hours before he was up again-you can tell how much his behaviour and how high his needs were .I had to stop looking at TikTok with all the self diagnosing going on.I’m pretty sure that a lot of what parents think is autism is in fact normal behaviour.Btw I’ve been looking after children well over 20 years and have a lot of experience with children with autism and behavioural difficulties.My grand daughter definitely masks at school but there is no point even attempt diagnosis-she’s 13 now - but the school she is at are supportive and she herself is pretty aware.we will help as a family as much as we can.Having a diagnosis of ‘mild’ if you can call it that-won’t really help- realistically I agree that only those children who will be severely affected as they grow up should get the most help.

Because my son is articulate, is quite independent in regards to going out and about and is a friendly chap, people often dismiss the fact he is autistic. What they don’t see is what happens at home, they don’t see the toll the day takes on him and they don’t see the burnout when he has worked so hard on masking. The things that people don’t see are the things that break your heart. School teachers would often remark they didn’t think he was autistic and he didn’t get support. This has led to him being home educated as school had a catastrophic effect on him.

Opinions, support, understanding and empathy go both ways. Please don’t minimise someone else’s difficulties because they look ‘ok’ on the surface of things.

daisiesdahlias

As a supply teacher you just need an awareness of the general areas of difficulty that may occur within the main areas that get a diagnosis. Every autistic child is different, there is a varying combination of over 60 possible traits in the main areas of difficulty.

The class teacher will have more access to the finer details.

A diagnosis is hugely helpful. I have found reading autism reports a great help as an educator and as a parent it has been invaluable for my child within school, Cahms and hospital.

user1188
Ah Sonora those pesky girls sbd women now bumping up the diagnosis rate you have an issue with.

Nice

My daughter has full PIP and an EHCP and is verbal. Is that ok?

No the op is not dismissing the crippling anxiety that goes with high functioning autism - believe me when I say you’d much prefer to have a child with high functioning autism than a child with a learning disability and autism as depending upon the severity then you could be essentially raising a child who never develops past a certain age for example they could have a permanent mental age of 10 yrs

it is clear that the op has not come in here to rile people

@OctopusComplex - think you meant to quote someone else?
or you’ve pasted my reply to @MonkeyMindAllOverAround

Please can you delete this comment.

Well yes of course everyone has mental ill health just as everyone has physical ill health. You wouldn't expect anyone to go through life with no episodes of physical illness why do you think they would with mental health?

You yourself are dismissing the problems of other people too.

it isn’t a race to the bottom and all people like you and the op are doing is trying to pit each other against each other.

it’s wrong on so many levels.

Agree @Quitelikeit on your point - mine are ok on some days and I’ve managed to work part time for some of the time since they got diagnosed, that’s a clear reflection that they have lower care needs.

I do think we need to get to a state of debate where we aren’t telling anyone how they can express themselves and terms they can use - that always makes me concerned.

Quitelikeit

“believe me when I say you’d much prefer to have a child with high functioning autism than a child with a learning disability and autism as depending upon the severity then you could be essentially raising a child who never develops past a certain age for example they could have a permanent mental age of 10 yrs “

You don’t know what you’re talking about. Some of us have children we’re not sure will make it to adulthood.

I'd assume that a middle aged woman getting a diagnosis later in life is able to cross a road safely. She is able to get herself up and dressed on a morning without prompt. She's able to make her own way to places without supervision- she cannot have gone that fair in life without a diagnosis if not.

A lot of us were misdiagnosed. Wrongly medicated. Suicidal. Some did commit. Some detained long term in mental hospitals.

I see the distinction that you are trying to make but please don't assume a late diagnosis means a person managed.

I agree @Toomanysquishmallows - our DS is autistic and ‘masks like a girl’…..that was what the assessment team said. I think way too much emphasis is being put on splitting girls and boys and splitting traits into the two genders.

Boys mask. Boys have mental health disorders relating to the overwhelming generalised anxiety they have due to sensory difficulties as well as many other things.
Yes, it’s important to show how girls and women are going undiagnosed but not to the detriment of boys being missed if they mask.

Thank you for understanding- that's exactly it.

I appreciate I haven't explained myself very well. I'll hold my hands up that I haven't had the best day and probably shouldn't make a post like this on days where I feel low.

My sons parent's consultation was 2 hours long. Looking at his work makes me so proud but also so sad. He writes like a 5 year old though he is just beginning to understand full stops and he's beginning to put them in his work. Still no interest in friendships but is now managing to take himself off to a quiet area designated for him instead of lashing out so that's positive. EHCP review just after Easter which I always dread too.

Just an overwhelming day which probably got to me too much after the meal I went too at the weekend. I just so wish my son was able to do more.

I absolutely have not come on here to offend anyone. I'm just a worried mum that is scared for my sons future and others in the same situation.

@Verbena17 , I totally agree with you ,the gendered descriptions of autism don’t work for your son , as they don’t for my daughter.

Well your language would also be disrespectful by some people's standards, it is better to say someone is autistic than to say someone "has autism" now, from what I have read.

I'm at the beginning of this journey with my child .

Quite. I'm sure I'm not alone in being told it was OCD and depression for years

I struggled a lot with GCSEs and uni.

It was only after uni and depression that I finally ended up being diagnosed.

Point taken. I absolutely agree with you there.

Again though - we are talking about different things and this is not gender specific.

It is also not just women. Men and boys are also misdiagnosed. My son can go through phases of telling me he wants to kill himself on a daily basis. Or he writes it down.

As said previously many times - this is not boys vs girls.

My son goes to a special school he is at a year 2 level in year 8 and has 2 to 1 support and this doesnt look set to change.

He never meets anyone's threshold for severe (including mine) as he can talk and use a toilet.

I dont really know if these children in mainstream schools, playing football and shopping are going to impact on him.

Im suspicious there is a strong assumption that if someone can talk they can go on to lead independent lives regardless of how all the other traits combine and present.

Yep exactly.

Please forgive my ignorance, but I don't understand why they didn't just replace the offensive term 'Aspergers' with something else. That would go some way to solving thr problem.

@user1188 it’s been an interesting thread - that sounds like a very tough run of it

It absolutely is about girls.

The diagnosis rates have gone up because we are now better informed with how autism presents in girls and that the diagnosis process is skewed towards boys.

Apparently for some ridiculous reason girls and women finally getting the diagnosis they deserve and are entitled to takes from others.

Well frankly that’s just tough and as a mother of 2 children who have gone through hell I for one couldn’t care less what the op thinks.