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 don’t think it is that simple. It is not about diagnosis, it is about clarity around needs. A diagnosis can make it easier as can provide that clarity, but it can also muddy the waters eg by diagnostic overshadowing. I also suspect if your dd had been diagnosed earlier then the outcome may well not have been different; I’ve seen too many children who were diagnosed early primary who have developed anxiety and fallen out of school, even those in support units.

In some ways parents of very high needs children do seem to have things easier - there is no question they need support, no tribunal cases to get a special school place, no argument over a residential placement as they age. Support just seems to be offered without needing to request it. But that is a very simplistic view. They still have to argue over the correct support or placement, respite gets cancelled at a moment’s notice because the second of the two carers needed is off sick, houses have locks on every door and kitchen knives are kept in a safe along with medications and other keys. There are fights for very expensive bits of equipment like safe space beds or buggies. Social worker can’t quite distinguish between child protection and disabilities. Behaviour is not just challenging but also dangerous - many families are well known to the police. They may not be suicidal but just get out and fancy a walk across the motorway or jump in the river. Sleep can be scarce. And when the Social worker says ‘residential’ all you hear is ‘Winterbourne View’.

A few months ago there was a thread on here from someone who had been at a conference about autism. I can't remember the context. (ie health care worker?)

Also at the conference were a large number of people with autism, there for a variety of reasons, some speaking, some there to hear the latest research etc.

the poster went to a talk about stimming by a researcher who has been looking at it for a number of years (can't remember to what end but doesn't matter)

At the beginning of his lecture he defined stimming. He used 2 examples. Example 1: a short video of someone in a meeting with a fiddle toy on their lap spinning it round and round constantly while participating in the meeting discussion. Many humms of recognition and approval from the audience.
Second example, a non-verbal 5 year old banging their head repeatedly against the wall (wearing a padded hat thing) while parent or teacher was sitting with him, trying to get him to engage in an activity.
This second video got an angry response. In fact the lecture was stopped as people complained about it.

The gist of their complaint was - that child is not representative of us, so it should not be included in a talk about autism and stimming. The lecturer insisted that autism is a spectrum, and that all on the spectrum are included in both research and in the presentation.
The audience were not happy and felt that having such a child included in the presentation lead to people having 'the wrong idea' about autism.

The poster was shocked, and started a thread similar to this one about the
'mainstreaming' of autism and where does that lead those on the 'severe' nonverbal end of the spectrum.

I completely understand both sides of the discussion, but I do have sympathy with the OP of this thread and the poster of that one.

It can be managed. By a combination of learning to identify triggers and reducing those where possible, and were not possible learning skills to reduce the intensity, physical symptoms and distress of the emotion.

Some people are more able to learn and implement these skills than others. Some will never be able to.

But to say anxiety is not treatable is not correct.

Medication also

For a lot of people with autism sadly their anxiety isn’t that manageable or treatable. It’s too interwoven as part of them to ever fully be managed

ds is 13 and has been on anti anxiety medication since he was 9. We are “lucky” that CAMHs agree to see us and do have a good caseworker at last but he hasn’t got the cognitive ability to access most things which could help him manage his anxiety so we are always in the state of dealing with the flight or fight side of things.

I wish anxiety was treatable for DD. She is 13 and won't leave the house. If only it were so simple as seeking treatment.

Obviously we do what we can to minimise things that make it worse, sadly that mostly means being at home. What a life. HF my arse.

This makes me really angry. My child now adult is very severe with only a few words and he rocks, head bangs etc. This used to be known as classic autism due to its recognisibility. All these parents complaining that it doesn't represent their kids just shows how far the diagnosis has strayed. Not that hf kids don't have problems but a different type of diagnosis is needed.

I agree Spottycarousel

but I just wanted to point out that it wasn't an audience of parents. It was an audience with a large number of people with autism.

they were saying that picture doesn't represent US.
In other words, they were articulate and able enough to attend a conference about autism, and somehow only wanted 'people like them' to be included in the debate.
They were uncomfortable I think being grouped with that 5 year old non verbal kid banging his head.

and that is the problem I think that we are talking about on this thread.

I suspect that discomfort when being faced with the reality of classic autism is a big part of why people didn't want to watch it. They don't want to be associated with such a representation.

I get it. And it's a big problem both sides.

But they don’t want them to have a different diagnosis. Why?

I think people at the severe end have been sidelined to the extent they've been forgotten about by many. People don't see autism as like that anymore and such videos are uncomfortable viewing as it threatens what they think autism is.

I may be totally wrong and like a lot of people I have a lot of pain and anger wrapped up in this issue.

Neurodiversity is a spectrum. Some people may never be able to live independently, others may lead seemingly normal life and only struggle privately.

The support people can access depends on their needs - someone who can live independently won't seed assisted living accommodation for example. And would be unlikely to receive it even if for some reason they have requested it. So I don't think you have anything to worry about...

I haven't RTFT. While I have sympathy with you OP, I feel YABU. Just because more and more people (especially women and girls) are being diagnosed but are seemingly high functioning, it doesn't mean they shouldn't be diagnosed or be able to say they are autistic.

My psychiatrist has confirmed I am autistic and I'm about to have a formal assessment (she can't do it for health insurance related reasons). I am mid 30s, with a DD, a professional job, a husband, a home. But I also have depression, anxiety, PTSD and am constantly exhausted and overwhelmed with sensory issues and from masking.

Being autistic makes you much more likely to suffer other MH problems and people with HF ASD are 80% more likely to commit suicide. Yes, 80%!!

Don't you think that should be recognised and support put in place to try to prevent deaths and other serious MH conditions?

Don't you think that should be recognised and support put in place to try to prevent deaths and other serious MH conditions?

Don’t you think OPs son should get specialist schooling?

She said in her OP that he does?

But using your logic, you obvious don’t think he should as you haven’t explicitly stated such?

sorry Possibly ND’s logic. Applied in her final comment

Don't be ridiculous @Shelefttheweb I neither said, nor implied, anything of the sort.

I do understand where OP is coming from but asd with additional needs doesn't mean people without additional needs don't suffer or have issues. It's just they aren't always so patently obvious.

I think you’ve articulated it perfectly

If the poster had started a thread to complain about OPs son you might have a point.

It absolutely is correct to say that anxiety isn’t treatable.There is no medication and other coping mechanisms simply don’t work for those with autism as it’s too severe ( hence having an autism diagnosis)and other traits of autism make it even harder. It ruins lives.

I recently was apologising to my neighbour about the noise DD makes at home and explained that she is autistic. He was extremely surprised and said but I see her going to school by herself, she does so well. That showed me how autism is perceived by people still. For decades it's been the Rainman savant stereotype and the idea that it mostly affects males. It couldn't possibly be a young girl taking herself off to school.

As more and more people get diagnosed, especially girls now and women in later life, it's becoming apparent that a far bigger part of the population is ND than anybody thought. And a lot of them probably are negotiating the NT world with varying degrees of success. So is it necessarily a bad thing if this becomes the version of autism that the public recognise? The "high functioning" autistics are the ones that people will be working with, having relationships with, encountering on a daily basis. They need adjustments and understanding from NT people as they navigate life independently. That doesn't take anything away from those with more profound autism/autism alongside a learning disability who will continue to be understood by medical professionals, their carers and the services they access.

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.

I've drowned 3 times (age 3 resuscitated by lifeguard, 13 saved by RNLI and 17 saved by neighbour) and have a daily battle against suicide. But according to this thread I shouldn't have my autism diagnosis and shouldn't get any support because I'm able to post on Mumsnet.

And people have the cheek to say we lack empathy!

(Awaits pile on from NTs with zero self awareness)