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.

Yes, I completely see your point. I'm in S Glos where the referral (not diagnosis) criteria has recently been restricted to basically children who have had any contact with social services or the police. This is massively unfair on children from parents who have been battling on to cope, not understanding why their child is like they are, but who have so far not gotten to the serious point of calling the police (you can also see immediately the unintended consequence of this change).

However, this change has obviously come about in response to an avalanche of referrals in recent years where any child of any slightly quirky behaviour is sent by teachers, health visitors, SALT etc to a paediatrician. I often feel my son would be classed as 'high functioning', and the paediatrician told us that his diagnosis would be what was formerly labelled as 'Aspergers'. While I am hugely grateful for the support put in place at school and from the health service and our home life has improved enormously from better understanding of his needs, I still ask myself now and then 'is he really a disabled child, or is this just him not liking life the way it currently works?'.

Perhaps we should be changing the environment so that all children are happier, rather than labelling those who call BS on our quite frankly bizarre modern times as 'neurodivergent'.

@Shelefttheweb

Yes, but you don’t need to have the diagnosis.

That's not the conversation I was having, so while true it is totally irrelevant in the context.

negate when the doctor makes the diagnosis. They don't just say "you're autistic, don't forget".

It is a long and wide ranging report(or should be), and within autism there are levels of impact, numbered 1, 2, and 3.

You may have got the latter, many many people get the former.

Perhaps we should be changing the environment so that all children are happier, rather than labelling those who call BS on our quite frankly bizarre modern times as 'neurodivergent'.

Jesus Christ the ignorance is strong here.

Please. Take your ableist shite elsewhere.

Like others have mentioned, I think the problem is in the distinction between autism and intellectual disability. It seems that when you are given the diagnosis of autism, there is no further assessment for intellectual disability, and nobody actually tells you that your child has an intellectual disability.

I don't have much knowledge of the subject OP but I think you might be onto something. I recently blocked the word 'autism' on instagram because every day I was being shown videos such as "signs my baby was autistic before aged one" showing completely expected baby behaviour such as flapping their arms or being fixated on an object. Very strange.

For those comparing with cancer - ‘cancer’ is not a single condition, it is broken down into types depending where in the body it originated, and stages.

Agree. Lumping everyone together under one diagnosis of autism isn’t helpful. My son is 24, needs 1:1 support at all times even at night. The amount of people that are shocked when they ask about him and I say he’s autistic. I’ve had comments like “wow I never knew it could be that bad “ 🙄

But what if they're not mentally impaired?

Diverse is not impaired. if your brain works differently, but still does what it needs to, then the issue is not having room for that brain to work the way it does.

Many autistic people also have disabilities, coexisting, but I don't agree that autism in itself is a disability.

@Fansandblankets

Agree. Lumping everyone together under one diagnosis of autism isn’t helpful. My son is 24, needs 1:1 support at all times even at night. The amount of people that are shocked when they ask about him and I say he’s autistic. I’ve had comments like “wow I never knew it could be that bad “ 🙄

What would another diagnosis for people bring to your son?

Nothing.

I think it is becoming quite common to see high functioning autism as a proper disability when in fact, it has been around forever. I do think as well that many children with high functioning autism are mollycoddled to the point it is becoming unhelpful and even damaging to the child.

People who can learn to manage their disability (disclaimer: not everybody can) should be encouraged to do so and to live a life as normal as possible. I hate to see so many people saying perfectly attainable stuff is no longer possible because of their “disability” and I say that as a disabled person, with a disabled child and with severe autism running in the family. Yes, we find it difficult to cope with change (very), really struggle in crowds, and have the attention span of an iceberg lettuce but that doesn’t mean the world has to revolve around us, for those with a severe form
of autism, yes, but for those who can manage most usual stuff, nope. We just need to try harder and we do, as many other people do for different reasons.

@OctopusComplex

Many autistic people also have disabilities, coexisting, but I don't agree that autism in itself is a disability.

It doesn't matter if you agree or not. Stick to facts.

If you meet the criteria for an autism diagnosis you also meet the definition of disabled.

What you think is irrelevant

As an autistic person married to another autistic person, with 2 autistic children, I absolutely despise these autism top trumps threads. It feels like a gut punch. Like my difficulties don't count as someone else has it worse. It debases us.

To be fair, I totally agree that ALL mainstream schools should be changed to be sensory-sensitive environments for ALL children.

Obviously disagree ref the labelling bit though 😬

@Zooeyzo

Question for the women diagnosed as adults: did you get your diagnosis for validation of your feelings of always being different?

No.

Do you think it would have helped you to have a diagnosis when you were younger?

Yes.

What if you you weren't diagnosed and your parents had said I know you're different/nd and this is how we can help. Putting things in place at home to help you become more organised or even sending you to a therapist to talk about stuff. Just helping you more and not judging you. Would that have been as good as having an official diagnosis?

No.

Why do you ask?

Yes disabled people need to try harder

WTAF

I think you need to read about autism in girls. High functioning Girls tend to have a lot more mental health issues. I’m not sure suicide attempts, eating disorders, self harming and significant mental health issues are ‘less’ of a problem, perhaps just different?

I just don't know what they get out of it. It makes no difference to OP child if an autistic 12 year old goes shopping with their peers.

It's almost like keeping up with the joneses and 'mine is better than yours'

Utter shite.

But your example of the wheelchair user just demonstrates the point. The limbless person is more disabled ( I’m presuming the limblessness is ‘only’ legs). The person with COPD has severe difficulty with walking. The limbless cannot walk EVER, not for a single step.

I know what you mean OP and it's definitely a tricky one to articulate.

I follow a mum on YouTube who takes her three children with autism to Disneyland. From watching her other videos it is pretty clear that the children are able to wait and queue for things in a similar way to NT children (I have children the same age so can compare easily). You see them wait for flights and queue for food with relatively little fuss, especially considering most kids hate queuing. I'm not saying that the children don't struggle with other things BTW or that they don't have autism, but it's clear that their struggle isn't in this particular area.

The mum takes full advantage of the disability priority passes so that she can skip the normal queues. All I can think when watching the videos is that it's pretty shameless to take advantage of their diagnosis like this when they don't actually have additional needs in this regard and also that they have added time to those that genuinely struggle to queue, hence making the attractions less accessible for other disabled people.

What the actual?????
My DS is autistic (what you would call ‘high functioning’) and has GCSEs at level 8 and plays piano like Mozart and yet needs me to choose his clothes, remind him to wash and go to sleep, manage his sensory based eating disorder and help him plan his days, of which consist mostly of extreme anxiety.

You need to realise ‘high functioning’ autism is a very unhelpful term but the people who you would class as high functioning, really do not ‘function’ very well at many times throughout the day at all!

all attitudes like yours do is encourage masking which creates massive issues. People shouldn’t feel they have to hide who they are just to fit in and keep other people happy.

trying harder doesn’t take away the disability. It just adds more pressure to conform

How did they get diagnosed?

What difference does this family make to yours?

@teacakie @Fladdermus its not about 'top trumps' or 'keeping up with the joneses'. It's about people who are caring for those living a really different life than anything that looks remotely 'normal' or 'neurotypical' or 'neurodivergent and proud'. It has to be about the carers because usually in these cases the disabled person can't express their feelings on the matter fluently enough to join in the debate. It's about having all of the language that could be used to describe that experience and that life taken and diluted and used for something else, argued over by other much more capable people, so that the carer can't even adequately express their experience or that of the disabled person they care for.

No because within all due respect - this isn't what I mean. Absolutely valid point in regards to girls and their mental health etc. I take that on board and I am not for one moment minimising it.

I'm talking about life skills.