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.

my son doesn’t have a grading 🤷🏼‍♀️

DSM5 diagnostic criteria are used here. The clinical threshold for a diagnosis of autism is:

“persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”.

NAS

“They all assess you against a set of criteria for autism, found in diagnostic manuals ICD-10 and The DSM-5. “

“International Classification of Diseases, tenth edition (ICD-10) The ICD-10 presents a number of possible autism profiles, such as childhood autism, atypical autism and Asperger syndrome. These profiles are included under the Pervasive Developmental Disorders heading, defined as "A group of disorders characterized by qualitative abnormalities in reciprocal social interactions and in patterns of communication, and by a restricted, stereotyped, repetitive repertoire of interests and activities. These qualitative abnormalities are a pervasive feature of the individual's functioning in all situations".
Diagnostic and Statistical Manual, fifth edition (DSM-5) Although not the most commonly used manual in the UK, DSM-5 is likely to have a significant influence on the next edition of the ICD. This manual has recently been updated and is also used by diagnosticians. “

And elsewhere

“The ICD system is used by the UK and other members of the WHO. It allows doctors to look at clusters of symptoms to form diagnoses for all health-related conditions, including mental health conditions.
The current version is ICD-10, and it is ICD-10, rather than DSM, that psychiatrists in the UK predominantly use to diagnose mental health conditions.”

The current version is ICD-11

https://icd.who.int/browse11/l-m/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f437815624

Autism spectrum disorder is characterised by persistent deficits in the ability to initiate and to sustain reciprocal social interaction and social communication, and by a range of restricted, repetitive, and inflexible patterns of behaviour, interests or activities that are clearly atypical or excessive for the individual’s age and sociocultural context. The onset of the disorder occurs during the developmental period, typically in early childhood, but symptoms may not become fully manifest until later, when social demands exceed limited capacities. Deficits are sufficiently severe to cause impairment in personal, family, social, educational, occupational or other important areas of functioning and are usually a pervasive feature of the individual’s functioning observable in all settings, although they may vary according to social, educational, or other context. Individuals along the spectrum exhibit a full range of intellectual functioning and language abilities.

Same answer, I'm not a psychologist and don't know how the current diagnostic criteria works. Not sure the spectrum has highs and lows though.

Again, why do you want to know?

I think autism is much more on people's radar than in the past (a good thing!), which is why you hear more people discussing it and wondering if it's a possibility if they/their child has possible traits and is struggling. I can imagine though that in the situation you described when such a high percentage of the mums were suggesting this while their kids (outwardly) seemed fine/able to do so much more than your son, that could have felt as if it was trivialising his diagnosis. So I appreciate what you're saying there. However, that doesn't mean that anyone can get a diagnosis and that all of those girls will. Strict criteria must still be met. It isn't something done lightly and as others have said, just because a child appears 'normal' in public, doesn't mean they aren't struggling massively behind the scenes, often leading to a major burnout at some point. Also, the term 'spectrum' is misleading because someone could be highly verbal but unable to function in certain situations, so 'high functioning' in some areas but 'low functioning' in others.

What is normal? What counts for distress or a life that is painful and hard to endure on a daily basis? I am ASD as are my children and bc of our so called functioning we are treated as weird and rejected by all manner of people including the medical profession. And yet my Asperger's child cannot partake in all mainstream activities. He would not go to sleep tonight bc at 12 he is terrified of his second ever sleep over with a new friend - his second real one in his life. If you met him he's polite and intelligent but he cannot manage to leave the house some days and suffers from every kind of sensory and emotional overload. He is judged by what he can do and not by what he cannot and therefore needs support with. My MH is on the floor. I am broken by it. I haven't worked since last year and had a break down over Christmas. How much pain and suffering do families have to bear to gain recognition for their needs? I cannot even fill in half the forms for benefits or nhs assessment because it overwhelms me so much. I am sorry for your own worries but this post just indicates how ableist society is.

I have a relative with non verbal autism who will never live independently.

I completely agree with you.

I said similar Ona thread on here before though and got torn to shreds.

Exactly. Of course difficulties count no matter what. But they aren’t the same at all.

My son couldn’t join the debate, he’s a fully grown adult and wouldn’t know what a debate was let alone join in. His world is exactly the same it was when he was 3 years old .

Your son’s difficulties don’t get to devalue the difficulties of others. Also I have a verbal nephew with autism who will never live alone, it is highly possible my daughter won’t either.I am a registered carer too. There are always going to be people who have things worse in all sorts of struggles who have all our sympathies but it should never and thankfully doesn’t make other peoples difficulties any less worthy of support and understanding.

“It has to be about the carers “ no it should not be about people who don’t have autism .

“that life taken and diluted and used for something else, argued over by other much more capable people”

The only arguing I see are parents such as yourself time and again trying to devalue autism experienced by anybody verbal. You poke the bear you’ll get a reaction which is what you clearly want.🤔

My son is verbal. I've said that previously

Replying to the posts I quoted below.

You should of tagged that particular poster then. Who are you replying too?

I'm also waiting for you to point out the specific things I've said that say I have issues with the increase in girls being diagnosed? Again just copy and paste please

so 'high functioning' in some areas but 'low functioning' in others.

high/low functioning refers to IQ so no you can’t be high functioning in some areas but low in others.

I don’t have to do anything.

“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. “

“If autism becomes such a common thing to have - what about the most vulnerable? “

It has been pointed out to you time and again that we now know autism can present differently particularly in girls. Masking can hide difficulties.Thankfully more girls and women are now getting diagnosed.

Unless you have an issue with this you should no longer have any “ worries”. If you do then clearly you have an issue with women and girls getting diagnosed and increasing diagnosis levels which you perceive as taking away from your more worthy son. You’re still devaluing how autism can present and the increase in diagnosis.

But your son is one I would worry about too.

Hf Autism in girls should have a different name .
My dd is at uni after getting straight grade 9 and A's in a levels but struggles socially .
She was diagnosed at 18 after no one mentioning it ever at school.

It's so under diagnosed and mid understood !

I get your point though but I'm not sure she will get a job either as she can't deal with people ..

I also have a son with SN who will never live alone so I get it .

They are both a massive worry 😞

Different does not mean top trumps or worse than. A girl who is capable of socialising, going shopping independently, doing well at mainstream school is different from OPs son. That lack support and masking may lead to burnout, chronic anxiety, and suicide attempts does not change the fact that her needs are different. She may have a difficult life struggling with chronic mental health problems, falling out of job after job because she can’t cope with the environment or coworkers, struggling to keep her home clean. OPs son may live a happy life in his own world with carers looking after him and two carers needed everytime he goes outside. But that still doesn’t change the fact their needs are different. Why are people so against a different diagnosis?

Absolute utter bollocks! What a load of crap 😂

Where does that say I worry about the increase in the diagnosis of just girls? If you read the full thread, I continually say 'children' and never ever have referred to anything as just boys. Its clear to see. It just happens to be my daughters football team. It could of easily been the same in a group of boys.

It is obvious my post was never ever about girls vs boys. It was about the most vulnerable children with autism and believe it or not - that includes girls!! Shocking I know!!

I also find this that you have said before hugely offensive to those parents who have non verbal children - though no idea who it's aimed at 🙄

'The only arguing I see are parents such as yourself time and again trying to devalue autism experienced by anybody verbal. You poke the bear you’ll get a reaction which is what you clearly want.🤔'

@boboshmobo i agree he autism in girls needs to be called something different, girls with it have huge needs . They are however completely different to my daughters needs , I would describe her as having moderate autism and she attends a special school. Equally there are children at her school who are far more severe than her .

Vulnerable comes in many different guises though. Just because someone in able to be more independent doesn’t mean they are less vulnerable indeed that may make them more vulnerable to a lot of risks.

you are trying to make a black and white picture where it simply won’t work because it’s way too complex a picture

I worry about them all. I have a developmentally delayed, non verbal (ZERO words, extremely limited understanding) pre schooler. We are shut down, our concerns minimised, ignored, dismissed constantly. We have been on endless waiting lists. He's been seen once when we were told it's likely he's on the ASD spectrum but it's a two year wait for the next step. Even to get this far we've had to constantly push and complain. We've been offered no additional support while we wait. Fighting for an ehcp is a separate, but no less challenging, battle. And I think...if my child who is so obviously not NT (and it's true - everyone picks up on it now, I get comments every single day) struggles to get recognised and supported, what the hell do people do who have kids who can mask and who do function somewhat well? It's baffling to me. And as criteria tightens up and fewer and fewer echps are granted, more and more children are going to suffer. It's awful.

YANBU op.

The diagnosis is so wide now as to be rendered meaningless in many ways. However many people are now recognising this and there is a push to split the diagnosis, in America at any rate.

In my social circle most families are affected in some way or other but there is simply no comparison between those who could never live independently and those kids who essentially live NT lives.

I do worry that those with profound needs will ultimately slip through the net

My main point was how can someone with a high flying career have the same diagnosis as those that cannot leave the house independently. How can they both have the exact same diagnosis of autism.

No one is trying to take anything away from anyone. A diagnosis is a diagnosis. If you have autism then you have autism.

“It has to be about the carers “ no it should not be about people who don’t have autism .

It has to be about both. Carers are people too with their own needs, their own vulnerabilities, isolation, burnout, who may suffer chronic sleep deprivation and physical injuries from the person they care for. They may be unable to work due to caring, and unable to leave the house because they can’t leave the person they care for alone. Their marriages ruined and families split as it is not safe for younger siblings. Their finances destroyed through inability to work, fighting for support, and trying to repair a home or belongings broken by meltdowns. Whose life is walking on egg shells. Their inability to leave the house may mean their own physical and mental health needs are totally unmet.

Yet when they reach out for support they are told “It’s not about YOU”