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.

Why is it alarming? You seem to be implying that because these girls can be relatively independent, at the age of 12, from the very brief glimpse you had of their lives, that they are less worthy of diagnosis than your son. That they somehow cheapen the diagnosis even though you have no idea what struggles they've faced or might face in the future.

Trendy label, ugh.

I have an autistic DD who sounds very much like the girls in the OP. She's 12, she has friends and is independent, she gets the bus into town by herself to go shopping with them. That doesn't mean she doesn't also find life really bloody difficult.

I am so glad we pursued a diagnosis for her. Autistic women are THIRTEEN TIMES more likely to commit suicide than non autistic women. I'm hoping that by her having this "trendy label" that she will understand herself better, be kind to herself and not become a statistic.

My cousin’s daughter is currently being assessed for autism.

she’s done all the things you describe but as she got to her teens meltdowns at home escalated in frequency and intensity.

violence, breaking things, hitting her parents.

she school refused most of last year and is now out of school.

she can mask incredibly well and if she’s in a social situation and you met her you’d never know.

You know your son, you don’t know other people’s children or their family experiences

@AnorLondo I find it alarming at how many children are possibly on the spectrum at this current time yes. It worry's me how cahms will cope if referrals continue to rise. As I've said, they are stretched to the very maximum limits.

It worries me how schools (both sen and mainstream) will cope if numbers continue to rise. I had no choice but to move house to get my son a place in his current sen school. Places are extremely limited.

I have absolutely not said they are in anyway less worthy of a diagnosis - again please point out where I have said something so cruel?

In terms of these girls - yes you are correct in that I have had a very brief glimpse into their lives. 100%. I don't pretend to know everything.

From the conversations I had and listened to at the table - all these girls academically are doing well. They all enjoy football and are very talented. (Our girls are amazing and we are top of the league!)

The mums basically knew there was something not right - it was also not just girls either - and their gut feeling says they could be on the spectrum. I then gave advice and was asked questions which I answered the best I could.

Your very post is about comparing children with autism though and about how your son has it worse!!

I get you @user1188

I understand exactly what you are saying and I agree100% with you. I have a Grandson who has ASD. Diagnosed at age 3 and gets support at school. He is verbal and actually quite bright, but dealing with him is a nightmare for his parents. He has recently had 6 months of therapy, because he was terrified of crisps. If he saw a packet or even a single crisp he would go berserk, wouldn't stay near one etc. etc. He probably will not be able to work - like you we don't know.

I also have a (much older) niece who was diagnosed at age 9 with ASD. Like you I also understand that girls present differently and that they are much better at masking things. However My niece went to a prestigious University on a Scholarship, holds down a good job, has lots of friends and a long term live-in boyfriend. She herself, in fact, questions whether she really has ASD

They both have ASD and both have had some problems. But there is a world of difference in how much help each of them needs/has needed.

I would also like to say that if 8 out of 11 children have ASD - or suspected of being, I would have to question how meaningful a diagnosis can actually be? certainly for some like my Grandson - but maybe not for others, like my Niece? ASD is a broad spectrum - so where does the broad spectrum of neurotypical people come in? There has to be an overlap surely?

The part when you talk about how normal their lives are (pure speculation on your part) and how you think if they get help it might somehow take it away from your son.

Although TBH I do think this thread was started to rile people up, although even thinking that can provoke the Wrath of the mods.

Why on earth are you worried about Cahms and schools if numbers of diagnosis continue to rise? Mental health and education difficulties will need to be supported regardless. You don’t suddenly get treatment from Cahms if you have a diagnosis. CAMHs often give the diagnosis whilst treating difficulties when autism becomes clear and clarity is needed for treatment.

What are you suggesting? We ignore our better understanding of autism and research?🤔

Silvers11

Your post has just illustrated beautifully ignorance of autism in girls.🙄

My son was fobbed off for years in primary school. No teacher would ever support the need for assessment despite throwing up their hands at his social and cognitive difficulties in the classroom. He was putting loads of energy into blending in and getting by. But by the time he got to secondary school it all fell apart for him. He was finally diagnosed at age 13 with autism.

On the surface nobody suspected anything was wrong (still don't) After all, he was in mainstream school, had friends, travels independently into the town centre to meet up with them on occasion. But behind the scenes, we have a child who is barely getting through his GCSEs, makes himself physically sick from anxiety of social expectations at school (because his "friends" dropped him for being too "strange"), eats a samey-same plain beige diet of chicken nuggets, plain pasta and bananas, and prefers to hide behind a computer screen, etc.

But, enough about me. You said yourself that one person's autism is nothing like another person's experience with it. And you should know that many people, particularly girls, are master maskers. And it's hard to get a glimpse of a person's true nature from a football pitch. The NHS certainly isn't handing out diagnoses like candy, so if your daughter's teammates end up with a diagnosis of autism, you have to accept that they obviously see something you don't (and probably wouldn't) Having a child with autism does not make you an authority on the subject.

Agree. In all contexts...there are threads where people argue over who can call themselves single parents, who can say they have anxiety, etc etc.

Pointless gatekeeping that doesn't help anyone.

Two people in my family have high functioning autism. I also know a family with two nonverbal profoundly autistic girls who live in an assisted living facility. It's the same condition, but different symptoms and levels of severity. It's not like you're given the diagnosis and then automatically given a certain level of care that takes away from someone else. You're still assessed according to your specific needs.

Exactly. Also a diagnosis doesn't automatically mean a strain upon schools (especially if we're talking about girls like those the OP describes). My DD got her diagnosis a year ago and nothing has changed for her education wise - she's in mainstream, no special provision, in fact she started secondary last year and I've not even spoken to the school about her ASD. It's possible that she will need support at school as she gets older but right now her diagnosis is affecting nobody.

It’s supposed to be the opposite really, rather than increasing the burden to society, the reason to pursue diagnoses is that if you’re very lucky you can avoid awful mental health outcomes and make life choices that take your triggers and constraints into consideration.

so if you want to reduce the societal burden we should want people to have the self knowledge to make good choices if they can and to recover and move on when they fail without wondering why and assuming they’re faulty.

I completely disagree with you. I have a niece who is on the spectrum and I know what her issues are/were. I am simply making the point that while she needed some support in some areas she did not need anything like the support that my Grandson does, just to be able to function in a neuro-typical world

I could socialise at that age and wasn't diagnosed until middle adulthood.
Now I can only live independently with support from multiple agencies and have never been able to work.

I attended a neurodiversity seminar at work at few weeks ago. It was very interesting and one of the main points that came out of it was that ASD is probably far more common than we think, in large part due to massive under-diagnosis in girls.

The seminar was largely about accepting and accommodating neurodiversity in the workplace, and had a lot of stuff about autism being a ‘difference’ rather than an ‘disorder’ and a strength/superpower. I get it, particularly in the context of a workplace, but I found myself wondering if parents of children with autism who are non-verbal (for example) would find that narrative helpful.

Girls tend to mask more. You do not know what is going on in her head and what lies ahead. Your niece doesn’t speak for all girls.

As I said clear example of ignorance.

@AnorLondo so could you explain what you would class as severe autism?

For me it's non verbal children. And those who as they get older pretty much stop developing and get further and further behind their peers.

Please notice that in this post along with every other post I have not been gender specific.

and it was so clear that the information they were giving out only applied to certain parents. says @user1188

I too attended such a course. It was invaluable. says @Blu3Salv1a

I think that is an excellent illustration of what the OP is talking about - @Blu3Salv1a is in that group of more socially acceptable parents while the OPs DC with more profound needs is sidelined even by the support available to her.

I have a 13 year old who, when diagnosed, would have been considered managing, doing well even.

She now can't leave the house, and while I appreciate the difference between non verbal and selective mutism the result is the same outwith her immediate family.

She would have been put in the HF/not severe/Asperger's box at the point of assessment. Just a few years lasted her autism would be considered severe, classic, low functioning.

How do we categorise ever changing people?

The DSM5 needs to be re-thought.

I can see that things look different if you have a child that people can see from very early on is likely never going to be high functioning for any stretch of their life, and that most of the therapies and adjustments make a difference to some of the kids with lower care needs.

As an autism mum, I just use the term autistic.
People would think my young adult cousin has ‘severe’ autism because he has the mental age of approximately 7, however, he’s always super happy and now his mum knows how to support him and keep him pretty regulated, there is very little ‘severity’. He has a full and active life, whilst being supported by carers and his family.

My own DS however, people would term as mildly autistic but they never saw his melt downs in his childhood and younger teen years, don’t see him masking his everyday massive anxiety, it’s doubtful that he will have relationships because of his sensory difficulties with touch and smells etc and we don’t know if he will be able to work. And yet, strangers wouldn’t even know he was autistic.

So I think the ‘level of autistic’ terms aren’t helpful at all really.

How are they sidelined?

I’ve had to call the police ( example sge used)and didn’t feel sidelined. I attend several support parents forums. Our kids range and vary hugely, nobody feels sidelined. It’s often commented on how great the support is whatever the difference.