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AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

Special needs parents - am I unreasonable to think this way?

626 replies

user1188 · 29/03/2023 11:15

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.

OP posts:
Lippydoody · 29/03/2023 18:11

MonkeyMindAllOverAround · 29/03/2023 14:39

I think it is becoming quite common to see high functioning autism as a proper disability when in fact, it has been around forever. I do think as well that many children with high functioning autism are mollycoddled to the point it is becoming unhelpful and even damaging to the child.

People who can learn to manage their disability (disclaimer: not everybody can) should be encouraged to do so and to live a life as normal as possible. I hate to see so many people saying perfectly attainable stuff is no longer possible because of their “disability” and I say that as a disabled person, with a disabled child and with severe autism running in the family. Yes, we find it difficult to cope with change (very), really struggle in crowds, and have the attention span of an iceberg lettuce but that doesn’t mean the world has to revolve around us, for those with a severe form
of autism, yes, but for those who can manage most usual stuff, nope. We just need to try harder and we do, as many other people do for different reasons.

I actually think that’s a pretty ignorant opinion to have purely because it’s also quite dangerous to many. My son certainly looks like he can handle a lot of the things life throws at him, if you spoke to him you may find that he copes amazingly well to the point of why should he get any support. You can’t possibly know what happens outside of that small window that you see. It’s why many children and adults don’t get the support they desperately need. It’s why so many are purely brushed under the carpet.

Verbena17 · 29/03/2023 18:11

ohyouknowwhatshername · 29/03/2023 17:58

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.

Wasn’t it that Asperger’s missed out some people who didn’t necessarily meet all of the Asperger’s criteria?

Spendonsend · 29/03/2023 18:11

ohyouknowwhatshername · 29/03/2023 17:58

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.

Basically the diagnostic criteria for autism and aspergers were almost indentical accept autism had early language delay and aspergers didnt, with autism you could have a low IQ, but you didnt have to, you could have a normal or high IQ. With aspergers you couldnt have a low IQ but it didnt mean high. Normal was fine. The problem was lots of the children with early langusge delay caught up or even overtook the aspergers people who could still have unusual tone and speech patterns. There didnt seem to be much way of predicting with autistcs would get more verbal language and dIagnosus was inconsistent between centres with some opting for high functioning autism and some aspergers.

SparkyBlue · 29/03/2023 18:16

OP I'm just about to start homework so I haven't read all the replies but I agree with your post. I've gone to parenting information groups and a "more than words " course for parents of children with autism and yes we are all aware it's a spectrum but some parents had completely non verbal children and one poor woman had a non verbal child who had smeared faeces all over himself the day before as soon as her back was turned (poor woman looked stressed to bits) meanwhile others were in mainstream school with minimal extra help doing great and we were all shoved into the same group. It was ridiculous.

GG1986 · 29/03/2023 18:24

I get what you are saying, however like you say it is a huge spectrum. My daughter has just been diagnosed, she can go to the toilet by herself, her speech is great, she is working above average at mainstream school, can read and write etc, however she also has adhd, sleep problems, high anxiety, sensory issues, social issues. We don't claim DLA or need a EHCP, she doesn't need a space in a special needs school.

Blu3Salv1a · 29/03/2023 18:25

Just because yours getting minimal help doesn’t mean you’re doing great. My son was looking for ligature points and getting zero help.

RosaGallica · 29/03/2023 18:30

I am strongly of the opinion that the uniquely British need to label nearly everyone who is quiet, has an internal world, and can think about ideas like justice, as autistic or ‘special’ or, in other words plain ok’ wrong, is a reflection of the unique British need for social control resulting from its inequality and class system.

It’s social totalitarianism. Nothing more.

I have worked with youngsters with severe pmld and the label of ‘autism’ doesn’t really matter very much compared to the practical issues of communication, behaviour and toileting involved.

Original poster
user1188 · 29/03/2023 18:32

Blu3Salv1a · 29/03/2023 18:05

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.

You're making it all about girls. My post was never ever about that.

I'm sorry your girls have been through hell. So has my son. As he does daily - as I'm sure yours do too. Why is it different for him because he's a boy?

The increase in diagnosis in girls is a good thing. As an sen mum, I know many parents of both girls and boys and I'm well aware of the struggle parents have with their girls.

OP posts:
SouthCountryGirl · 29/03/2023 18:33

RosaGallica · 29/03/2023 18:30

I am strongly of the opinion that the uniquely British need to label nearly everyone who is quiet, has an internal world, and can think about ideas like justice, as autistic or ‘special’ or, in other words plain ok’ wrong, is a reflection of the unique British need for social control resulting from its inequality and class system.

It’s social totalitarianism. Nothing more.

I have worked with youngsters with severe pmld and the label of ‘autism’ doesn’t really matter very much compared to the practical issues of communication, behaviour and toileting involved.

You don't get a "label" for just being quiet. You may want to look up Autism and the Triad of impairments.

sillysarnies · 29/03/2023 18:34

Haven't read the full thread, sorry, but i just wanted to say that you never know what is going on inside a child's head. My 12yo DD was diagnosed with autism aged 10. She is high functioning but she just wants to be 'normal' - whatever that means. So she watches and mimics and masks and looks like she's having a whale of a time - until she gets home and it all comes out. We have meltdowns like you wouldn't believe and school refusal and terrible anxiety. It's totally possible that those girls are autistic and, as many have said, it's a spectrum. But girls mask more and are trickier to diagnose - it wasn't even on our radar until a therapist suggested that she might be autistic when she was 8 and then it took another 2 years to get a diagnosis.

The other thing to be aware of is that high functioning autistic children are also much more prone to mental health issues. I know of at least 2 of my friends' children who have self harmed as teens and even tried to commit suicide, which terrifies me for my own dd.

SparkyBlue · 29/03/2023 18:34

@Blu3Salv1a if that's in reply to my post it's the parents themselves who were saying their child was doing great. We all went around the room and introduced ourselves. Many had children doing well in school. They were happy and settled and had friends . I probably phrased it wrong they were getting minimal help because they didn't need lots of extra help.

Blu3Salv1a · 29/03/2023 18:36

I have an autistic son too.

You seem to have an issue with how girls present and raised numbers of diagnosis. Numbers have gone up because we are better informed particularly with how autism presents in girls and how the diagnosis system was letting them down.

RosaGallica · 29/03/2023 18:37

SouthCountryGirl · 29/03/2023 18:33

You don't get a "label" for just being quiet. You may want to look up Autism and the Triad of impairments.

Show quote history

Increasingly, that is all it takes. That is what the op is saying. It has been a trendy label for a very long time.

AnorLondo · 29/03/2023 18:39

user1188 · 29/03/2023 18:32

You're making it all about girls. My post was never ever about that.

I'm sorry your girls have been through hell. So has my son. As he does daily - as I'm sure yours do too. Why is it different for him because he's a boy?

The increase in diagnosis in girls is a good thing. As an sen mum, I know many parents of both girls and boys and I'm well aware of the struggle parents have with their girls.

Show quote history

And maybe the girls you mentioned in your OP have also been through hell.

AnorLondo · 29/03/2023 18:39

RosaGallica · 29/03/2023 18:37

Increasingly, that is all it takes. That is what the op is saying. It has been a trendy label for a very long time.

Show quote history

Do you have evidence or is it just your own ignorance speaking?

Original poster
user1188 · 29/03/2023 18:42

SparkyBlue · 29/03/2023 18:16

OP I'm just about to start homework so I haven't read all the replies but I agree with your post. I've gone to parenting information groups and a "more than words " course for parents of children with autism and yes we are all aware it's a spectrum but some parents had completely non verbal children and one poor woman had a non verbal child who had smeared faeces all over himself the day before as soon as her back was turned (poor woman looked stressed to bits) meanwhile others were in mainstream school with minimal extra help doing great and we were all shoved into the same group. It was ridiculous.

Yes I've been to these groups too and found exactly the same.

I did a 6 week course when my son was first diagnosed and it was so clear that the information they were giving out only applied to certain parents. You could see the shock in other parents faces when one mum spoke about having to call the police to get them to come to her home because she couldn't control her daughter.

It's definitely not one criteria fits all and it never will be. I just think it would be so beneficial to everyone (the child, the parent, school, professionals etc) to have some sort of system where it can be broken down a bit more. It would help everyone else understand it better too

OP posts:
Blu3Salv1a · 29/03/2023 18:43

Do you dismiss all disabilities as trendy labels? What ignorance.

Lippydoody · 29/03/2023 18:43

RosaGallica · 29/03/2023 18:37

Increasingly, that is all it takes. That is what the op is saying. It has been a trendy label for a very long time.

Show quote history

snd I suppose all the families who have fought to have assessments done, have gone through the years of waiting and fighting for a diagnosis would agree with you?

Blu3Salv1a · 29/03/2023 18:45

I too attended such a course. It was invaluable. All our dc varied but we all took something from it.

Re calling the police, hoards of parents with children who are verbal and autistic have had to call the police, myself included.

Original poster
user1188 · 29/03/2023 18:49

Blu3Salv1a · 29/03/2023 18:36

I have an autistic son too.

You seem to have an issue with how girls present and raised numbers of diagnosis. Numbers have gone up because we are better informed particularly with how autism presents in girls and how the diagnosis system was letting them down.

Can you point out the specific things I've said that relates to my issues with just girls being diagnosed please?

Please copy and paste them so I can see.

OP posts:
Spottycarousel · 29/03/2023 18:49

user1188 · 29/03/2023 18:42

Yes I've been to these groups too and found exactly the same.

I did a 6 week course when my son was first diagnosed and it was so clear that the information they were giving out only applied to certain parents. You could see the shock in other parents faces when one mum spoke about having to call the police to get them to come to her home because she couldn't control her daughter.

It's definitely not one criteria fits all and it never will be. I just think it would be so beneficial to everyone (the child, the parent, school, professionals etc) to have some sort of system where it can be broken down a bit more. It would help everyone else understand it better too

Show quote history

Yep, and the shock at myself having a child who is non verbal apart from a few odd words.

Autism is not a one size fits all. There's a whole manner of different needs and the kids/adults at the severe end get forgotten about.

Original poster
user1188 · 29/03/2023 18:53

@AnorLondo where have I said they haven't? Again please let me know what I've said that shows I don't show any sympathy towards these girls and their parents?

I do find it alarming that 8 out of 11 parents around that table possibly have or possibly have a child with additional needs. That is alarming.

OP posts:
Spkat · 29/03/2023 18:57

gamerchick · 29/03/2023 11:33

No, they really don't.

Show quote history

Why not? Genuine question as I'm not sure why it was taken away.

SillyLavish · 29/03/2023 18:59

Thehonestbadger · 29/03/2023 16:43

I very nearly made a similar post to this yesterday. I can not tell you how whole heartedly I agree @user1188

I have and autistic DS who is low functioning. He’s completely non verbal, very little understanding, no sense of danger, still in nappies…etc. He is physically very large for his age and requires a high level of care, we receive DLA and carer allowance as I had to leave my much loved career when he couldn’t manage in childcare. Whilst he is young (toddler) and things can change, a frank conversation with our paediatric consultant (specialist in field) suggests it’s highly unlikely a child presenting like DS at this age will ever live an independent life. Our expectations have been set low by all the specialists involved. It’s all quite distressing and has been hard to come to terms with. (We also have a neurotypical daughter younger than him too)

I was recently told off in a women’s/parenting support group for referring to DS as ‘severely autistic’ in relation to the pressure and strain hubby and I are facing caring for him. I said that because the group were blatantly downplaying our struggles with a premeditated assumption that autism is now ‘just a few quirks’ as opposed to a life altering disability. An opinion we encounter constantly and honestly makes me want to scream into a pillow!

Immediately a moderator jumped in to tell me that she was autistic herself and it was hurtful and inappropriate to use a term referring to level of severity. When I asked her how exactly I was supposed to differentiate between the type of ASD that can use a computer to moderate a support group and the type of ASD that can’t use a spoon independently (because whilst both have challenges they are obviously different challenges) she didn’t really have an answer.

It is an impossibly wide spectrum and the inability to differentiate in any meaningful way between those on opposite ends of it seems insane! It’s like saying all ‘physical mobility problems’ will now be called PMP and it doesn’t matter whether you have a mild limp or are confined to a wheelchair, you’re all now classed the same. But of course that would never happen largely because those on every end of mobility issues have representatives able to advocate and voice their opinions. There are plenty of wheelchair users able to say ‘hang on a second that’s not fair to me at all!’

ASD is completely different because only those on one end of the spectrum are actually able to advocate and voice opinions.
They then dominate the ‘autism acceptance’ world, set expectations amongst the general public and create the ‘politically correct’ framework in which everyone is then expected to operate. Meanwhile those on the other end of the spectrum, unable to advocate for themselves are essentially swept under the carpet. The stark reality they and those who care for them face is never seen or acknowledged and when their families or carers try to voice their reality they are simply labelled a ‘insensitive’ or told they don’t have ASD so how could they possibly understand?

One thing I am entirely sure of though is that the only people being disadvantaged and misrepresented by ASD being one universal title are those who haven’t got a clue it’s being done to them and are unable to argue it.

I should mention that during my journey with DS it’s come to light that I myself am likely Autistic, this has been suggested by several professionals, but I have managed through life to this point without significant issue or disadvantage. It makes me want to cry to think that someone like me should share the exact same diagnosis as someone like my DS. Madness!

What you were told in that group sounds awful. I was diagnosed with autism in my 30s and would understand roughly what someone meant by "severe autism"... It is ridiculous that so many different needs are under one nonspecific umbrella term. Your analogy of all physical mobility problems being referred to as "PMP" is spot on.
I actually think the social issues often found in autism can lead to these kind of discussions being even worse.

However I would respectfully disagree that the only people that are being misrepresented are those who are unaware of it, or at one end of the spectrum. I'm at the other end of the spectrum and feel very misrepresented by those who are surrounded by support, perhaps have a good job that suits their specific abilities, who generally thrive and want to say autism is just a difference. They completely forget the - let's call it "high-functioning" - autistic people who don't have family support/a loving partner to split costs with/someone else to cook the dinner/enough money to buy in help/lots of friends who accept them as they are/a lucrative niche interest or skill. There are people like me who basically have to operate as if we're neurotypical but can't really do it. Crucially, having cheerleaders and support (even something as basic as having a partner to split chores with) makes a difference, but many of us simply don't have these things or due to our struggles we have experienced lots of traumatic events (eg. homelessness, esp. if struggles not recognised, being vulnerable to abuse etc) so have mental health issues or other struggles to boot.

There's such a wide variety of need and none of it is helped by having one broad term for so much. When I was assessed I was told that they take into account whether it has caused problems in your life - but this leads to the odd situation where simply by having different luck or opportunities one person wouldn't get a diagnosis but another would (I swear this has happened in my family, with a member who is more obviously/typically autistic than I but has no diagnosis!)

Sirzy · 29/03/2023 19:01

Blu3Salv1a · 29/03/2023 18:45

I too attended such a course. It was invaluable. All our dc varied but we all took something from it.

Re calling the police, hoards of parents with children who are verbal and autistic have had to call the police, myself included.

I found the best thing from the courses I did was meeting other parents who get it. It didn’t matter that everyone’s children presented differently we could all empathise with each other and learn from the experiences of others. Some of us are still in contact years later and our children still face different battles but amazingly we manage to support each other without belittling what the other is going through.