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.

Not really. ‘Cancer’ is an umbrella term for a huge range of different illnesses. Ask any oncologist.

And what if they do? Do you think that those receive that as a diagnosis will just be able to manage w no support?

My ds would once have been described as having aspergers or high functioning autism. He does well at school, he can manage a shopping trip with friends. University should be fine.

But -
He struggles to make friends
He struggles with change and uncertainty
He can't use the phone ie talk on the phone
He can't ask for help - even something like asking where something is in a shop.
He can't advocate for himself eg with healthcare. As he has a serious medical condition this will be quite a big problem when he's an adult.

Whilst on paper there are provably quite a lot of jobs he could do he'd have to get past his fear of applying (the unknown) and interview (talking to strangers). And then learning the job would be difficult (can't ask for help) and if something changed his anxiety would be through the roof.

So his chances for living a happy and fully independent life are actually pretty fucking slim, for all he does OK as a teen.

Autism can disable you in all sorts of ways which aren't immediately obvious.

I have a young DS with strongly suspected autism. My sister has a teenage DD with autism. There are very few similarities in our two families' lived experience of autism. Our day to day struggles are completely different but I wouldn't say either child has worse struggles than the other.

(Tbh I'm not sure whether this means I agree with you or not OP)

Yes I had this discussion at my son's diagnostic appointment. I do actually say to people "basically he has what used to be ,called Aspergers, until that name has fallen out of favour".

I think even Higher functioning autism is too broad.

The assessment report breaks down the needs the person has. This can be shared with anyone that needs it. Everyone else can keep their nose out unless details are shared with you.

Not at all. Quite accurate. You could add in "apparently normal life until they have a mental breakdown or kill themselves" if you'd like.

I’d always wondered if my daughter was maybe autistic, but she was fine, doing ok at school and all set to grow into an independent adult. I lurked on the edges of a support network for parent of children with SEN until one of the parent of an autistic boy went off on one about how those of us with kids who were managing had no place in in the group.

My daughter is 16 now. She has needed constant support and supervision over the last year and that hasn’t stopped her trying to kill herself twice in the last month. It’s all because of spiralling anxiety and psychosis with her recently diagnosed autism at the core of it all. Believe me, just because those girls seem fine now doesn’t mean they’re not in need of just as much support as your son.

Somebody needs to know what ‘spectrum’ means!

Im not saying it’s you. I’m not saying it’s your daughters friends parents.

But we are all on the spectrum….it’s literally what spectrum means!

your child is not more special than anyone else’s.

Ok acne then. There's what my DSD has which is a couple of pimples and what I had that required an intensive course of medication.

I completely get what you are saying. It's seems that it's become almost fashionable these days, people pushing for a diagnosis and private providers quite happy to supply them for a fee. My daughter was diagnosed at 2, she is verbal and very clever, she is able to play many instruments etc but actually eating unless prompted is our struggle, we don't know if she'll be able to live fully independently, she has support from us and her university. I consider ourselves the lucky ones as she was non verbal until 4 and had blackouts too, these stopped at puberty

Oh dear

@MWBE because there is a huge difference! At my sons parent's consultation this morning, I ran into a child who I've known since he was little. He's 16 and communicates through makaton. I know makaton and was able to interact with him. His diagnosis is autism. Yes there are things that add to that but the only official diagnosis he has is autism.

If you compare that to a child at 12 who is trusted to go out shopping without adult supervision than that's a vast difference in terms of how advanced each child is. You cannot argue that.

I am not however saying these kids are neurologically 'fine'. As said previously, they could have a huge meltdown when they got home. I am not saying they don't find life difficult

@gamerchick No, they really don't

My adult child with ASD completely disagrees with you. They were diagnosed with Aspergers, grew up with this diagnosis, identify with this diagnosis and don’t identify at all with ASD. They believe it’s no better or no worse, just a different condition in a way. Maybe because we have two family friends with ASD who are adults, non-verbal, not toilet trained etc. Of course my child (who is verbal but non-selectively mute a lot of the time yet is able to hold a prestigious ‘square peg in square hole as opposed to square peg in round hole’ job) has their own challenges, and taking away the blanket ASD term will not remove their challenges or detract from these challenges but will group them more adequately for a more targeted diagnosis. And before you go there, they are not a Nazi sympathiser/lover, pathetic.

@gogohmm

It's seems that it's become almost fashionable these days, people pushing for a diagnosis and private providers quite happy to supply them for a fee.

Yeah, that's not a thing. Fucksake.

You pay for an assessment not a diagnosis.

@user1188 A close family member of mine (I would rather not say who) has been diagnosed with stage 4 cancer. Their first diagnosis. Right from the start, the level of spread of the cancer means that they are terminal.

Treatment may prolong their life but is unlikely to cure them. Even though I actually hope it will cure them.

Someone with stage 1 cancer and a more hopeful outcome does not trivialise the cancer diagnosis of someone with stage 4 nor does it mean that the person with stage 1 is going through nothing just because they have a higher chance of survival.

It is best not to compare your son to others. Autism has always been a spectrum disorder. Even back in the days of Asperger’s diagnosis. (Since learning why children were labeled as Asperger’s for the benefit of the Nazi regime, I am glad that children are no longer labeled Asperger’s anymore).

Yes the umbrella is now wider because ASD spectrum includes Asperger’s.

Other disabilities have higher or lower support needs. I think that people are used to certain disorders, disabilities, illnesses, injuries having a spectrum of severity and you are worried about your son’s diagnosis becoming meaningless is not warranted for the majority of people. Most will be able to understand.

There will always be some ignorant people making assumptions but there’s not much anyone can do to help them.

My daughter has autism (and ADHD and PDA.) Some days she could go shopping with her friends, some days she can't leave her room. Girls are also excellent maskers (resulting in burnout/eating disorders/poor mental health).Yes she may eventually lead a more independent life than your child but her diagnosis and her struggles are very very real.

If you compare that to a child at 12 who is trusted to go out shopping without adult supervision than that's a vast difference in terms of how advanced each child is. You cannot argue that.

Why are you comparing though? Just focus on your own child's needs. It doesn't matter that other autistic people are different.

I don't think they should bring back Aspergers under the same name.

It's disrespectful to many many disabled children who suffered considerable harm and neglect under this doctor. Doctors who have made great progress discovering or researching conditions should be recognised with the respect they deserve, but Asperger was representative of the very worst traits of the Third Reich.

When was your son diagnosed? Most autistic people live completely normal lives. Their neurotype should not be medicalised simply because a combination of their social, communication and sensory needs make them a minority.

It sounds like you don’t understand what autism is. From your post it sounds like your difficulties are because your son, who,is autistic, also has learning difficulties.

But why do you need the diagnosis to be different? Anyone that needs further clarification on your child’s autism has it via their report.

My daughters struggles are literally none of your business. You can know she has autism, if she or I choose to share that, the rest is nothing to do with you. It’s personal medical information. You don’t need something more specific, it’s none of your business.

That's fine - I don't even know if I agree with myself!

I know what I mean but it's very difficult articulate. I am not meaning to come across as though I'm taking away anything from other parents or their children in terms of their experiences and what they go through.

As parents with autistic children, we all have different journeys as well as the children themselves.

Interesting point made upthread about other disabilities too, eg Down's syndrome.

The media really focus on the 'capable' end of all spectrum. I saw a photo today of the man who play Reggie in Call the Midwife. Successful actor, speaks well, able to follow direction in an acting role etc. I would imagine he lives independantly wiht some (or maybe no) support. He may be in the group of people woth Downs who can read, and achieve GCSEs etc.

I contrast that with my friends dd. She is 10, and much, much more severely effected. She has almost no speak, and non which is understandable to those outside the family. She is just switching to a special school as main stream is not working for her. She cannot read or write. There is not a chance she would ever be able to do a written exam.
She will never be able to live even in fully assisted living, she is a constant flight risk, and so on.

The media really need to show a better representation of the full spectrum

I feel too that my DDs can parrot words they have no intuition for and don’t understand, and this can leave them incredibly vulnerable. Having a diagnosis does help, but this underlying feature of parroting, masking and vulnerability is unchanging.

but I do get it - my DDs have days and stretches where their needs for extra care are low, where the support they have works. Whereas for some carers and autistic people there are no days like that.

I understand Op and see your concerns. However. I have an autistic 8 year old who does fit the higher functioning diagnosis.

She has so many problems and i worry about her from when i wake up til late at night. She has violent meltdowns at home despite behaving immaculately at home.

She cant sleep independently and is often angry violent and very manic late at night. She can sometimes do playdates but often not.

You could meet my child on a good day and think she is functioning well but she really isnt a lot of the time.

She desperately needs a lot more help thsn we get. But i agree your son has much more conplex needs.

Do people think it may be the overly demanding nature of modern life that means more people need a diagnosis for their child ?