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.

Exactly @Fladdermus. I'm sorry to hear about your struggles.

I think many people are unaware that average life expectancy for autistic people is just 36, with drowning and suicide being main causes of death.

Your figure came from this paper looking at death by injury in America.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5388960/. It does not suggest that drowning is a leading cause of death, nor does it give life expectancy. The figure of 36 year relates to the age of death of individuals identified by the study not all those with autism. The deaths identified by the study relate to between 0.001%-0.007% of deaths in America for each year of study - several orders of magnitude below that for the prevalence of autism in the population. It seems you are not the only one to misinterpret this study though.

Looking for other studies: https://www.nicswell.co.uk/health-news/people-with-autism-are-dying-younger-warns-study found the average age of death was 54 compared to 70 for those without autism. However when broken down by LFA and HFA, those with LFA had a life expectancy of 39.5. It must be remembered that those with LFA also often have other comorbidities that increase risk. The way the cohort was identified also suggested they were at greater risk than the general autistic population as it was based on those who had contacted psychiatric services..

Another page presents these results (possibly American):
DSM level 1: slightly lower than the average life expectancy
DSM level 2: 50-60 years old
DSM level 3: 35 to 40 years old

Looking for a UK study, I found this pretty up to date study: https://www.medscape.co.uk/viewarticle/autistic-people-mortality-risk-51-higher-average-2022a10028cc
“This UK data found people with autism were on average dying 5 years earlier than members of the general population, with their life expectancy on average 75 years – 5.4 years less than the general population.”

A five year difference is bad but nothing like that suggested by those who misunderstood the first study.

TA-DA!

Crackin empathetic post to someone who you know is currently battling with suicidal thoughts. You put me back in my box. Well done. You win. 👏

I understand where you’re coming from but your posts are poorly worded. You can’t measure or compare a child’s autism by how ‘smart’ they are or how ‘normal’ their life might seem. It’s possible for someone to appear ‘smart’ but have extremely poor mental health, crippling anxiety, major difficulties with social skills etc. caused by autism. It’s also possible to have significant developmental delay but be happy/coping/content. Or vice versa. Both might have a diagnosis of autism. Really the diagnosis doesn’t tell us anything definitive about that particular person’s needs, which can render the term ‘autism’ ineffective to cover such a varied spectrum. I think what you’re saying is that more specific terms of diagnosis are required and I tend to agree.

You think it is appropriate to tell people their own or their children’s life expectancy is only 36? When in reality it is 75? 😡

My issue with separating autism into smaller subgroups is that I just don’t see how it’s possible. Where do you start? Nobody ever says how it’s actually going to be done.

when you have met one person with autism you have met one person with autism, the nature of the condition is that it can’t be pinned into specific groups and efforts to do so will lead to more people slipping through the net and certainly not help anyone.

a lot of people’s presentations will change as they grow and develop, how they are at the time of assessment won’t necessarily be how they are 5,10,15 years down the line. Ds needs at the age of 13 are much more significant than they presented when he was diagnosed age 6. Others may develop in the opposite way and develop in a way when their level of needs “decreases” from when they are diagnosed. In those cases shoe horning into a tighter group at the point of diagnosis could be very limiting moving forward.

I can see an argument for assessing based on level of care needs but that would need to be assessed on a regular basis to be an accurate description of care needs. Like the dla system age 5 Ds only needed lower rate care, now he is on higher rate care with lower rate mobility.

I guess what I’m saying is it’s all simply too complex to attempt to narrow things and I think it would hinder a lot more than it helped

Had the exact conversation with my friend about her non verbal, very disabled autistic son and my never shuts up and mainstream school autistic son. It's a spectrum. That's it.

There is nothing to be gained from relying on inaccurate data.

I'm sorry that you are struggling with suicidal thoughts. It doesn't mean we should take a dodgy statistic at face value though.

when citing studies and quoting statistics, it is important to be accurate. Especially when the statistic is likely to provoke fear or distress in others.

@Shelefttheweb your clarifying post was not disrespectful or a personal attack. It was simply clarifying and providing context to the statistic which had been incorrectly quoted.

Hmnn

1. widen the definition of a group to include more people
2. saying they shouldn't be allowed 'in' is socially unacceptable
3. widening it dilutes the specific needs of the original group, leaving many feeling sidelined.
4. dodgy statistics about suicide/life expectancy are used to back up the argument.

have I strayed into the gender forum because there are a surprising amount of parallels?

Babyboomtastic there are a lot of overlaps including in the populations. But suicide is much higher in the autistic population as are other mental health difficulties. And it is difficult to get appropriate help for those conditions. That might well be a significant factor in the five year difference in life expectancies. Though one other significant cause of death for people with autism was epilepsy.

I’d read the misleading 36 year life expectancy stat - sure it was cited somewhere ‘reputable’ without context, so @Fladdermus yoy made the same mistake as me - I really hope you take a turn for the better soon.

I enjoy discussing and glad to know more about stats (so many stats are quoted without context by BBC etc) but always worth remembering real people behind computers.

This is what I wanted to be able to say, but couldn't quite articulate.

As always @Sirzy has a sensible and balance view.

@jaqueandjill firstly this it's been the Rainman savant stereotype does not really describe my DC either, seeing as she is a girl and doesn’t have a “superpower”. I’m not sure it describes the OP’s son very well either.

Secondly why do you think it’s ok if my DC never works, had a relationship, or is visible in public day to day? Why is it ok for her world to be reduced to medical professionals, carers and services. Where is family? Where is life? Where is joy or hope in that?

I think if you felt less comfortable with my DC continuing to be shut away like a dirty secret, you would feel less uncomfortable about being associated with that kind of autism.

Seriously? Your saying men going into woman's spaces is the same as so-called high functioning autistic people being diagnosed?

I totally get this. Many conditions are like this though. That's why it's more helpful to look at an individual and their needs rather than their diagnosis.
Cerebral palsy will include the bloke who overtook me in a half marathon, a significant number of occupational therapists, and the teenager who has almost no volitional movement, no active communication and a severe learning disability. CP tells me nothing about who they are or what they can do.
Similarly, asd includes the guy who draws buildings, mathematical geniuses, people who, with a lot of effort are able to mask to appear to live a typical life, and those for whom the sensory and social environment makes it impossible to participate in any activity with other people.

Diagnosis may tell you where to start in terms of approaches... But it tells you very little about the strengths and needs of a person.

Don't think the poster was comparing you or OPs children with rainman. Are you pretending you don't know what stereotype means?

@supravit if it wasn’t a comparison of our kids with rainman it was utterly ignoring the fact of their existence, which would be par for the course on this thread.

would you care to share an opinion on my second point?

Op I don't think you are unreasonable. This might be an odd question and probably clumsily put but its genuinely something that confuses me when I looked into it...or navigating it (we have a seriously disabled family member and in another branch of the family someone who has been flagged by teachers as possibly autistic)

If diagnosis is based on symptoms alone not medical markers how do we even know it is the same thing..or has the terms just become meaningless?

Neuro diversity seems to now be the norm and what is normal anyway?

The part where you were asking a poster why they think it's okay? Why would I answer a question about someone else's opinion.

Oh my god. I don't know how you could completely misinterpret everything I wrote.

Firstly, no I expect the Rainman stereotype doesn't fit your DD because it's, you know, a stereotype.

Secondly, WHERE in my post did I say that I think it's OK if autistic people don't work etc? Or that I want people shut away like a dirty little secret? Or that I'm uncomfortable with being associated with a different kind of autism? I literally said nothing of the sort.

Then don’t try to tell me I’ve misunderstood them either