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.

Or even ‘they’re fine’

@NotJohnWick Ok, accepting that some people who are living independently have less apparent struggles which are often dismissed, which is awful because they are still struggling and still need support...

Can you not also see that the difficulties are different by an order of magnitude for my colleague who is a high-level manager, successful in her field, fully independent and articulate and respected; and for my DC who may never work, has never experienced 'success', is unlikely to live independently, cannot articulate very basic needs or self-advocate, and is routinely shunned and dismissed even by others with the same diagnosis?

Can you not see how, in a world where we accept disability based on achievement-in-spite, all the attention will go the my colleague and not my DC?

This, or a similar take on it, comes up regularly.

Other people don't take anything away from your child.

FWIW I was the 12 year old you talk about. Out with friends, keeping myself safe. When I was 16 I was locked up and repeatedly raped by a man in his 60s, becsue I didn't actually know how to keep myself safe. So yeah, I was able to cross the road safely at 12, but I was nearly40 when I realised my vulnerability. When I was 12 I was trying so hard to fit in, this followed me around until I met DH in my mid 20s. That's a lot of years of trauma and abuse. I also suffered alcohol addiction, because when I was 12 nobody recognised my struggles. Part of that was because I hid them and part of it was just the decade we were in. When I was 12 I was punished, when DS & DD were 12 they were helped

Don't underestimate the danger and vulnerability of being an autistic person who can 'manage'

It makes no difference to your son. You focus on what he needs, I will focus on what I need. What my children need. It really is that simple.

Agree with this. My dd has not been in education since COVID..she's 18 next month. Life got much harder when she hit puberty. She hardly goes out now. It's a daily struggle.

Sorry OP if I misread your original post. We're all in it together on one level or another.

Where have I said anything about funding? That's absolutely not what this is about! Funding is there for children who need it most.

What I mean is society's view on autism. If there are more and more children getting diagnosed but are able to lead a somewhat normal life - I simply worry about those that don't.

UABVU. Intelligent females (ie those without learning disabilities) with undiagnosed ASD are something like 14 times more likely to commit suicide!!!

this is high functioning autism and I agree there should be a difference in the diagnosis. However your son has other needs than just ASD.

I don't see myself as lucky. And again, this is not about girls vs boys. Not gender specific.

This is about those who can get a high flying career and have the same diagnosis as those who are totally non verbal and not able to leave the house without attendance of another adult.

Looking back now, did you realise she was different at 5, or feel she needed support? Genuine question

I completely understand.

it’s early days for us as my son is 3 but he’s non-verbal with no understanding at all. On the pathway to an austism diagnosis. Unable to do hardly of the things his twin can do, who is now talking in full sentences and is potty trained. Eg still needs a high chair and to be spoon fed.

Other parents with seemingly normal (to me) children also aged 3 are also on the pathway for an autism diagnosis.

and it feels completely different to me and what we’re experiencing with it.

But there you go again, assuming that somewhat normal life, because you have seen a tiny snippet of their life or heard they’re out shopping.

Argh! Perhaps, perhaps, the OP is being dismissive of others' struggles.

Or perhaps she used all of her available resources to be kind and polite and reassuring and offer the perspective of her experience to these parents, as she said she did in her OP.

It can be very lonely and exhausting parenting a child with needs like the OP's DS has. What is rare on these threads is people taking extra care to be supportive of the parent in that position, or ensuring they are not dismissive of the larger, more obvious, often also unsupported struggles of the DC described. @OctopusComplex did it really nicely and carefully but that tends to be the exception.

Is it okay if I ask why they shouldn't bring the Aspergers diagnosis back? I really don't know why it was absorbed in to the Autism spectrum and not used any more. My son is waiting for a diagnosis, I would have said he has something like Aspergers if that was still the term they used for it, but is it some major faux pas to even mention Asbergers now? I believe even using high/low functioning is a major area of discontent within ASD so I have no idea how I would ever explain his specific issues with just saying Autism or going in to a lot of detail, but equally don't want to cause upset to anyone by using the wrong terms.

What would you like?

It's the same with everything though - I know people with epilepsy. Two are able to drive, work full time and live a normal life. I have a friend whose daughter's epilepsy is drug resistant. Her mother is constantly worried it killing her.

But what you see on the surface as a 'normal' life might well not be. You say yourself you barely know these people.
Your perhaps not aware of the levels of anxieties that they have
The crippling routines needed to leave the house etc.
The potential self harm, eating disorders or suicidal thoughts they have.
Being able to go shopping or play a football match doesn't equal all is well. Nor does it mean that their potential ASD doesn't actually have a huge influence on their lives too.

It's the same with a lot of conditions. The severely affected are hidden from view and can't speak for themselves. They are often forced to stay home or in schools/centres that the rest of society don't have access to, because of safety or access issues. The more mildly affected can participate in society and to an extent advocate for themselves. Thinking of Down's syndrome in particular.

Watching CBeebies there are a lot of disabled children in the programmes. They have a presenter with Down's syndrome. It got me thinking that you rarely see severely disabled adults in adult programming (unless it's something specifically about them), much less actually presenting them.

I understand exactly where you are coming from. Sadly, the way things are at the moment, lots of people with varying needs are not going to get the support at the level that each individual requires . The only thing that you can do as a Mum, which I’m sure you’re doing already, is to fight for your son.

OP I have a lot of sympathy with you.

Of course it is not a competition, I have autism in the family, 2 nephews with a diagnosis, and my teen dd is almost certainly on the spectrum, but we face a 2 year wait for a diagnosis.
But none of them are in the same category as your son.

I think we need to look again at diagnosis and somehow come up with some way of understanding this better.

Many kids, like my nephews and my dd need adjustments at school, understanding and scaffolding, but they don't need special schools or 1:1 support. They need the diagnosis to make the school actually take notice of the fact that they need some adjustments.
Like pp, my dd struggles with friendships.
They are, as you point out, able to go on a live an independant life.

There has been such a increase in autism awareness and so many people on social media etc that we have lost sight of the kids, like your ds, who are not able to participate in the converstation

I'm brilliant at masking. Fucking phenomenal. You'd never ever know how my autism affects me because I'd never ever let you. I'm also pretty much constantly suicidal. Actively so in the past. Because of how my autism affects my experience of being alive in the world.

YANBU to have the thoughts, feelings and opinions you do. Absolutely not. You sound like a bloody brilliant mum, to be honest. Maybe we do need more differentiation in the diagnosis, maybe we don't.

But YABU to think you know what goes on behind closed doors, or inside other people's minds. Your experience of being a "special needs mum" is just that. Your experience.

What an awful patronising comment.

yes this problem is more generally about how the media presents and includes disability

Yet these kids have the exact same diagnosis as your daughter.

You keep saying this. Do you actually believe it - that doctors or professionals will see the word 'autism' and assume they know exactly what that signifies in each case? Is it because the word 'autism' is used in both cases and you don't think anyone really believes it's a spectrum?

So perhaps you'd like to see a wider range of labels (I don't mean that perjoratively) to distinguish between different places on the spectrum?

The problem is lack of and failing services, not other people. My child's needs might be less then OPs child, but they are also different - we are not punching in front of anyone in a line.

You are completely right OP does need to just focus on her child.

This competitive autism is disgraceful.

Yes. I think we need the diagnosis to be broken up, then it helps all on the spectrum, as it means you can be more precise about the kinds of difficulties. I was diagnosed following my own DD’s appointments (she doesn’t have ASD, other SEN, but it was flagged as a possibility due to her behaviour and close male members of my family having diagnosis; on reading about it I realised that I had it and flew under the radar due to being female). It has helped me understand how I function and improved my life in practical ways since being diagnosed.

But I don’t need the same kind of support as someone nonverbal and unable to live independently. I don’t think it makes sense to leave us undifferentiated.

@Londonlassy how so? I thought @NotJohnWick explained it well?