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.

They may have the same diagnosis in name but I’m quite sure those you consider high functioning will not be receiving the same level of support as your son.

There lies the difference.

Why is it assumed that support is just handed out? It's not.

My son was not diagnosed through cahms. He was diagnosed through paediatrics. We were left with a yearly appointment as soon as he was diagnosed. It went from every couple of months before diagnosis to yearly as soon as we got it. That was it. No further help. He went to a mainstream primary school.

Cahms is an 18 month plus wait to see anyone. When I eventually get an appointment after referring my son myself, I am told the same thing - unfortunately there is no services available for a child like my son and we are discharged. Again. I ring the crisis team when things are bad but again - no help. Nothing. What he needs doesn't exist.

He goes to a specialist school but that's because his needs cannot be met in any other school. He cannot get him self to and from school because he would be a complete danger to himself without adult supervision. He could not follow a curriculum. He goes to school to learn life skills but spends most days watching movies and drawing. He will get no qualifications.

He has the right support around him to get by day to day but he is absolutely not getting anything from any professionals or organisations that will help improve his life - that support seems to be non existent.

Children who are less able are absolutely not taking anything away from those who have HFA.

Let’s face it, there just isn’t enough support full stop. It doesn’t matter what level of support someone needs, it doesn’t matter their diagnosis. There just isn’t enough support and any little help you get you have to fight tooth and nail for.

its always one step forward and five steps back each and every time. Imagine the potential of all children, no matter their level of needs, would have if the correct support was in place.

OP

I think, I said previously, the issue isn't other people it's services.

You mention your son going to school. DD doesn't even manage that, yet by your own standards would be perhaps previously considered 'less' autistic.

It's a debate I struggle with but realistically there is little support out there and the support that a 12 year old girl who has gone shopping is likely to need isn't the same support that you need for your son.

A lot of people on this thread had mentioned how others perceive our children (or ourselves) and for me that's not a factor. I don't care if someone has a stereotypical view or if they don't understand all autistic people are not the same. In real terms it doesn't matter what anyone thinks. Any professional dealing with your child will do so on a case by case basis, not on the word 'autism'

I appreciate I'm not very good with words (I am autistic) but I'm trying not to offend

@Lippydoody yep 100%.

I think I've said it somewhere in the post already that a clinician at cahms told me 10/15 years ago they could offer so much more for young people. Financial cuts and increase in demand mean it's all gone. It's a scary thought to think what it could be like in the next 10/15 years.

I remember waiting 2 years to go on a behaviour course for my son which lasted for 4 weeks over video link. I knew it would be a complete waste of time but cahms refused to help my son any further until I'd been on this course. What they didn't tell me is after I had completed the course, they then write a report with skills you can use at home which should magically fix everything and then discharge you from the service completely. Absolutely horrendous.

I think I've said it somewhere in the post already that a clinician at cahms told me 10/15 years ago they could offer so much more for young people.

DS got a diagnosis at the upper end of that time scale and was offered nothing. I'm n fact even in school there was much less support and understanding.

When DD was diagnosed, not as long ago, I saw no difference other than in school (primary)

Cross posted where I've just talked about services - I completely agree with you.

Support isn't there for anyone. The majority of parents on this thread need support that they are not getting - we all do. But these are the types of children I was referring to as a worry. Services are completely overwhelmed both with financial cuts and also the huge huge waiting lists of referrals. As I said previously - it wasn't anywhere near like this 10/15 years I go. I remember our first ever appointment was a 4 month wait and I thought that was horrific!

There are children out there with a diagnosis that can manage. There's been a few parents on this thread that have said their child has a diagnosis but they (at the moment) can cope which is absolutely fantastic and I hope they can continue and grow into adult life and life as normal life as possible. There's no guarantee of course - sadly. However there are parents on this thread that agree that there child shouldn't have the same diagnosis as those who are less able.

There are fully grown adults with an autism diagnosis that are ok - they can get by. And I hope in the future that there will be more because that's all we want. For our children to be ok!

Sadly for a lot of us - and the majority on this thread, we know our children are not going to be ok. They are going to be vulnerable, they are going to struggle. With the constant increase of diagnosis i worry about these children and that includes your daughter.

That's interesting. I mean the clinician didn't specify what she could of offered but i distinctly remember her referring to it as letters so 'we could of offered you x y and z but they no longer exist'

But the funding crisis is across the board - you face a huge struggle to get eating disorder help these days that wasn’t the case 10-15 years ago. I feel this picture is bigger than increased diagnosis of autism.

we’re in both a physical and mental health funding crisis thanks to years of under investment.

Oh absolutely, it didn't take 3 months to get a GP appointment 10/15 years ago either. This issue is everywhere.

To me the charts on nhs spending clearly demonstrate the tories are the villains and should be the target.

Children who are less able are absolutely not taking anything away from those who have HFA.

Neither are children with HFA taking anything away from children who are less able.

In my experience when being assessed for "help" you will need to explain what effect the disease has on you/the patient, rather than just stating "I have autism/whatever".

I've never said they did. My post has been about society not services.

Not helped by the £80 billion the NHS is still paying back for labours £13 billion of PFI investment.

The entire premise of your OP is that you are worried that if lots of children are diagnosed with autism such as girls who can go shopping that it will take away from those who are less independent and leave them with nothing.

Or the pandemic spending or Putin - obvious to me were at a historical low point on so many metrics.

They may have the same diagnosis in name but I’m quite sure those you consider high functioning will not be receiving the same level of support as your son.

There lies the difference.
Why is it assumed that support is just handed out? It's not.

My son was not diagnosed through cahms. He was diagnosed through paediatrics. We were left with a yearly appointment as soon as he was diagnosed. It went from every couple of months before diagnosis to yearly as soon as we got it. That was it. No further help. He went to a mainstream primary school.

Cahms is an 18 month plus wait to see anyone. When I eventually get an appointment after referring my son myself, I am told the same thing - unfortunately there is no services available for a child like my son and we are discharged. Again. I ring the crisis team when things are bad but again - no help. Nothing. What he needs doesn't exist.

He goes to a specialist school but that's because his needs cannot be met in any other school. He cannot get him self to and from school because he would be a complete danger to himself without adult supervision. He could not follow a curriculum. He goes to school to learn life skills but spends most days watching movies and drawing. He will get no qualifications.

He has the right support around him to get by day to day but he is absolutely not getting anything from any professionals or organisations that will help improve his life - that support seems to be non existent.

Children who are less able are absolutely not taking anything away from those who have HFA.

I didn’t say support is just handed out. I KNOW from personal experience that it isn’t.

My child too was diagnosed by a paediatrics at age 5.

Diagnosis isn’t a magic pill.

There are different levels of support with those who need more quite rightly should get more.
It sounds like for many that still isn’t enough.

Unfortunately the diagnosis isn’t the done deal and magic gateway to all the support the child/person needs.
Just like anywhere else in our healthcare system it’s poorly funded and you need to battle to be heard.

I feel for you that you seem to be having a hard time but to suggest that those who are high functioning should have some other label attached(or none at all) is not helpful.

Just like there is a spectrum within ADHD and you could say Cancer ( type, stage, treatment options) so is Autism.

@jaqueandjill my post was never about girls nor was it ever about funding or services - it's been brought up by other posters.

My post was about if there are more and more people with autism then what if society begins to think 'oh well everyone has autism.....so what?' Where does that leave the most vulnerable children.

Which is why myself and plenty of others oh this thread believe that autism diagnosis should not be so varied. Everyone on this thread has a right to their child's diagnosis and I would never even wish to take that away. I sincerely wish every parent and their child/children all the luck in the world.

It still stands that there are some amazingly intelligent autistic people who will go on to have amazing careers and somehow cope with very little help. If these increase (which I hope they do!) I worry that society will think THIS is autism we you and I know it isnt.

It is people like yourself who will twist and turn everything I say to make it sound like something it's not. Not once have I said I have an issue with autistic girls - I haven't. If you read it I haven't. It's happened to be a group of girls who posters like yourself have enjoyed twisting.

Of course they are! Just looking at education - Local Authorities have a finite amount of money to meet the needs of all students. If they were to spend some of that money on a eg residential placement for a HFA child needing specialist support then that would be about £150,000 every year not available to spend elsewhere. Ditto, if they decide to build a shiny new specialist school for children with profound disabilities then they can’t spend that money elsewhere. Or replacing a mainstream school beyond its useful life. It doesn’t matter how big or small the pot is there will still have to be decisions made about how to divide up that money and where the priorities are. And those funding decisions are made by councillors with the support of council officers based on what they understand about needs of children and what they can get away with in law

Why aren't the needs of HFA children just as valid?

But your post was about girls. It was an anecdote about a group of girls who play football, went shopping and several of their mothers thought they were autistic. I'm not twisting anything.

If society, ie Joe public, comes to realise that a lot of people have autism, that doesn't affect children with profound autism at all. Joe public will not be making policy decisions, running autism services or treating your child. Those things will continue to be done by experts and medical professionals who understand autism and its varying presentations.

However, Joe public will be working with autistic people with less complex support needs, encountering them in their lives every day. So again, why is it a bad thing for Joe public to understand that autism is more than those with a profound presentation?

But it IS what autism is - at least one side of its spectrum. The point is to educate people that it is a varied spectrum and symptoms can manifest with different intensity in different individuals.

Understanding the vastly varied symptoms of ND people is one of the challenges and the reason behind seemingly "high functioning" individuals being diagnosed late in life - these people had to suffer through childhood and young adulthood of experiencing symptoms of autism / ADHD without support or even understanding of others around them.

Remember one thing - these girls who can walk around the mall on their own also may experience sensory issues, overstimulation, meltdowns, shutdowns and the long list of resulting mental health concerns such as anxiety, OCD, depression etc. They may struggle with forming social relationships and be very vulnerable because of issues with processing social cues. Just because they SEEM fine to you doesn't mean they are "fine".

For you to say that this is not autism is like saying someone who needs walking aids to walk even short distances is not disabled because real disability means needing wheelchair all the time.

That's not what I got from your OP.

I said nothing about the merits of decision and was referring to both comments in the quote history. It is naive to think money spent on providing resources/support/facilities in one place doesn’t come at the cost of not being able to spend the money elsewhere, or that someone is not making a decision over how to prioritise funding. Though it is rarely as clear as a decision between HFA/LFA.

We see the impact very directly when we apply for oversubscribed schools - be it trying to get a place at a specialist school or a preferred mainstream school. For our child to get in another child is excluded - our child is ‘taking a place away’ from the other child. It is unavoidable