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 get what you're saying. But with any disability there can be levels.

My dd has congenital amputation disorder. Roughly this means that she was born with her arm missing from just below the elbow. But this condition can be anything from end of fingers missing to pretty much the whole arm. As a basic approximation the less you have missing the easier it is.
I have to admit to occasionally feeling a sense of irritation with a parent whose dc is "only" missing ends of fingers either despairing that their child will have such a hard life, or disclaiming that you just had to be positive about it and your child will never have any issues ever from amputation defect. (tbf the latter normally is a toddler parent!)

But I have to remind myself that actually someone whose dc is missing from the elbow, or who is missing both arms probably feels the same about me. And the fact that they have it worse, doesn't mean my concerns and worries aren't valid, ditto with the parents of the children who are missing the end of their pinky.

@daisiesdahlias what is the point?

RTFT.

I think having the diagnosis or label can actually help the person themselves to make sense of it, find strategies to cope, even if there is no funding attached to it.

Very well put @Shelefttheweb

@VeryApple The thread is 13 pages long. I said it isn't ALWAYS helpful, not that it never is

@daisiesdahlias if you want an answer to your question, then RTFT.

Or look outside the bubble of your experience and speak to a few diagnosed autistic adults.

Or don't bother, and just wonder forever. Learning isn't for everyone 🤷🏻‍♀️

This 100%

@VeryApple I have multiple friends with autism including the best man at my wedding. Open-mindedness isn't for everyone 🤷‍♀️

I wasn't literally asking 'I don't understand why anyone would want a diagnosis' it's a general question leaving the reasons open ended as they are different for everyone. For some, they may have an answer and for some they may not. It was a question to promote critical thinking rather than just always thinking a diagnosis is necessary. Obviously I wasn't clear enough as I've had to explain this

@daisiesdahlias some of my best friends are autistic

Absolutely brilliant 👏 Can't possibly top that. Goodnight 🤣

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!

Fashionable?

It's not a choice to be autistic

@VeryApple You presumed I didn't know any autistic people so I just responded telling you that I do? You're clearly looking for an argument so I'm going to stop engaging with you now. There's always one!

The diagnosis based on symptom clusters also allows for drift. Diagnosis is based on position on a range of spectra, spectra that everyone sits on. If you are above a certain point on a certain number then you pick up a diagnosis. But there is nothing defining when particular interests become restrictive interests, how much repetition is required for repetitive behaviour, when sound sensitivity becomes increased reactivity, when an introvert becomes lack of interest in others, etc. So the point at which each item is flagged can drift. And there is nothing to stop further drift. There is no black and white, no biological test. There is also no consistency in brain imaging.

Rollingdownland
“YANBU. I completely agree with you. There is no doubt it is fashionable now to say you have ADHD/ASD etc, and it trivialises those who suffer very badly with these issues.

Does my head in. I particularly notice this among middle class middle aged women - all longing to be diagnosed with (particularly) ADHD and then talk about it on Instgram.”

What a truely awful post. I have recently got a diagnosis for both at 54. Not telling anybody and needing a lot of counselling to process it. It has been massively helpful already. Life changing.

It only trivialises you if you think that middle aged middle class women are making light of your struggles, which they’re not. But the same is not true eh? You have no idea what some of these women have been through much as they look like they’re fine and just whining.

Thank you for writing this @Thehonestbadger - it is really honest and well expressed.

*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.*

This in particular is spot on.

I think the thing that bothers me most is the utter utter lack of empathy from most of these self-appointed spokespeople for DC like ours. It looks like it’s driven by desire to be really sure no one ever mistakes their cognitive ability or assumes they are in any way like our DC. Which is hurtful.

@Shelefttheweb We are on the same page. I think the rare woolly rule of thumb is when these characteristics impede everyday life or normal function, whatever that means. This does allow for parents with a low level of understanding to pathologise their children's growing personalities. Private diagnoses can now be obtained from people who never even meet the children - the parents just complete a questionnaire. Then the child is diagnosed for life. An ADHD diagnosis can preclude you from joining the armed forces - you have to demonstrate that you have been managing without treatment for two years in order to be eligible. These are not light diagnoses. I wonder how many parents realise this.

I never said it was. But there are loads of perfectly normal women (because it is women) very keen to give themselves some sort of label so they feel special.

And that does a disservice to those who are genuinely struggling.

@daisiesdahlias
“One of them could function and work and socialise the same as all the other children.”

have you heard of masking and camouflaging because this almost certainly wasn’t the case? And the child appearing ‘fine’ is likely the one who is suffering with their mental health much more, and will crash and burn at some point.
diagnosis is often needed more for children who mask and internalise their autism because otherwise people just say they’re ‘fine’ don’t need any help.
as a teacher I’d urge you to look into this further

I agree with you op.

Years ago 'aspergers' would have probaby been my child's diagnosis and now this term has been deemed as outdated and disrespectful. I understand it's a spectrum and that every child is different but I would like a respectful label to explain that my child doesn't have a severe learning disability.

Explaining that my child is in a mainstream school, walking talking and potty trained but struggles with xyz.. feels like I'm giving away too much private information about him. A term like aspergers gives away no personal information but explains to people quickly and concisely approx where he falls on the spectrum. I really wish that bit of language hadn't been taken away.

Rollingdownland

“I never said it was. But there are loads of perfectly normal women (because it is women) very keen to give themselves some sort of label so they feel special.”

And your evidence for this is?

WorriedMama1234

Well thankfully you don’t speak for all parents. I don’t want my children described as Asperges, we have autism.

@BungleandGeorge Well exactly! With 'autism' as the only information I had, all I could do was respond to what I could see. Further or different diagnosis could help me to support the other child better as well.

I think it's fantastic to be diagnosed later in life. It must answer a lot of questions.

However yet again - doesn't have anything to do with my post in regards to autistic children who need continuous adult support on a daily basis. 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.

It seems to be ok to put an autistic person who can function and get by daily in the same boat as one that cannot. Those on here who are autistic or have an autistic family member seem to be quite offended that I don't consider them to be in the same bracket as those that are non verbal for example.

I am not in anyway shape or form putting anyone down on this post. Not the parents and not the children. Having any child with any additional needs is extremely challenging. However the more and more it's diagnosed then the less recognised that will probably be.

I am fully aware that girls can mask. This was never girls vs boys. I have NOT said 'boys' anywhere in this post. I am talking about all children who are vulnerable where autism affects their life daily. I'm talking about children in sen schools. Those who get DLA. Those who have EHCPs. It is not gender specific. There are non verbal girls in my sons school who are on the spectrum.

Sadly this really is a case of if you don't have a child with very specific needs then you can't understand. This post well and truly proves that.

It depends if the child has a learning disability - some children with autism have a learning disability and some don’t.

The ones that don’t have the best chance at a ‘normal’ life whereas with a learning disability you are highly vulnerable for life as basically your mental age remains below what it ought to be.

I think that is the key difference in your opening post between your own son and the girls you mentioned