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.

Any many believe autism isn’t a single condition. It affects people in different ways, people have different traits, different struggles yet they all come under one label?

Dd1 has Aspergers, DD2 autism, so I was pretty annoyed when they scrapped the Aspergers diagnosis, my DD’s now have the same diagnosis of Autism yet they are very different, dd1 being very high functioning and dd2 being severely autistic.

I describe myself as neurodiverse, I don’t have a diagnosis, I don’t want one but I kind of fit the diagnosis of ADHD and high functioning autism, I prefer to say I am ‘neurodiverse’, i believe a lot of people are ‘neurodiverse’ yet have no diagnosis and don’t feel the need to have one. I do think ‘the one label doesn’t fit all’, autism seems to be such a huge spectrum (and the spectrum isn’t a straight line) and I do believe there should be more categories/levels (if that makes sense?) when diagnosing.

when my DD’s were diagnosed there was Aspergers, high functioning autism, classic autism and severe autism but not the Aspergers has been ditched and most are now just diagnosed as ‘autistic’.

As a parent with a dc with severe autism I get annoyed when I tell people that dd2 has autism and they compare her with people like Chris Packham or they compare her to someone they know who has autism who’s functioning much higher. People assume she may just have a few quirks and struggle socialising when infact she can’t really talk to anyone including me, she plays, spins, has verbal and physical tics, can’t cope with small changes, self harms when upset and will never be able to go out alone. It’s a huge difference to my other dd who also struggle but in a very different way.

My son has HF autism, he is verbal and can read etc, this is combined with sensory issues and dyspraxia
i dislike the label mild autism, I believe this is how other people see the person, it is not how they see themselves, under the mask they are struggling to cope with the world and have a very high base level of anxiety. He hides in the sanctuary of his room and has no IRL friends so his condition severely impacts his life and mine, I have to work but it is a low paid WFH job as I need to be there for him. He was getting DLA but now need to reapply for PIP now he’s 16 which is stressful in itself.

@MonkeyMindAllOverAround autism is a dynamic disability. People who seem to
cope fine one day (me included) can have days where an overload of stimuli or other factors makes something they could have done the day before impossible in that moment. It’s one of the things that makes it so difficult to manage. Some days I can ‘manage’ my disability, others I can’t and it was ‘learning’ to manage it - masking - that pushed me and many other autistic people into mental health crises.

My son has autism adhd and tic disorder he’s 2:1 at a specialist school. It’s impossible to compare people with an autism diagnosis with one another as if you’ve met one person with autism … you’ve met one person with autism. My son will never be independent . I too have autism and vastly different to my son but still have my own struggles

That actually makes me feel sick.

Just to make your life easier, autistic people should just push themselves into managing.

Have you any idea about the impact of this? Do you know any of the research on autistic adults who have been raised to 'act straight'?

Any thoughts on the suicide rates?

Any thoughts on the healthcare costs, work days lost, overwhelming financial burden of depression and anxiety directly correlating with this plan?

Because you act as if it's never been thought of before, whereas, until the last couple of decades, it was pretty much the way we were all extruded through the school system.

Shame on you.

i have a girl with autism, and I struggle with the assumption that because she’s a girl , she masks , she doesn’t! I also worry about her massive vulnerability.

Why does OP care about other autistic children? What does OP make a while inflammatory thread about her son being more autistic than other people? Why do people think we need to rediagnose people because others are 'worse' - how about people stop the crap and just focus on their own situation?

It's the difference between an internal and an external presentation of autism. Many girls internalise their autism because they are socialised to not be a problem - so their autism can be undiagnosed until it gets too much for them. That's the point at which they often end up with eating disorders, or refusing school etc. By diagnosing them earlier it may be possible to keep them in school and healthy.

An external presentation is what people think of as autism - people who stim, or can't be around others, can't make eye contact etc. People with this presentation get help earlier as their behaviour is more obvious.

My daughter is autistic, and I have lost track of the number of teachers etc. who have said they would never have picked her as the child with autism. She has friends, she can go out - but doing these things uses up all her energy and at home she can't put on the mask she uses with others - so we see the anxiety, and the anger, and problems with sensory issues etc.

Excellent inclusion there. A thread about autism and you post to tell the autistic person that their opinions on how it feels to be discussed by others in this way is wrong. Ableism in action!

@AmericasfavoritefightingFrenchman but 'autism' has never only meant 1 thing. Never. Every single person who fits the OP's and other similarly-minded posters' definition of 'autism' will still have individual, unique experiences and needs. It was never enough to describe them as just 'autistic' full stop. To understand and support them, there would always need to be much, much more clarification.

I haven't taken anything from anyone. I'm just trying to survive.

It’s a huge spectrum. Everyone is effected differently.

my son is autistic with learning delays as well as sensory processing disorder and severe anxiety and he has an ehcp, he’s just about managing in mainstream with support and he is very sociable and likes going out but needing a lot of support, far more than an average 12 year old. He likes to be out all the time.

I am also autistic but undiagnosed throughout my childhood. I moved out at 19 and able to function pretty well most of the time but I hate going out. I am very independent, if anything too independent.

I also think my daughter either has autism or adhd - she’s not diagnosed but it is becoming more obvious as she gets older.

as you said autism is a huge spectrum. Girls tend to go undiagnosed for years.

I think it is often really hard to get support for a child/adult whose autism is less severe and more subtle as people tend to shrug it off and say ‘you aren’t that bad’. But when you have a child or an adult with more obvious complex needs it’s more visible and more likely to get support!

I think people should be careful to distinguish between the suffering and difficulty that autism causes the person who has it and the parents or carers of that person. These have been conflated many times on this thread.

Yes this!

I've said this before but in a way, I'm glad my kid will never live independently. He won't have the same struggles that 'high functioning' autistic people have, trying to navigate a world that really isn't built for them without much support. Of course, this means I can't die until I'm 150.

DD has two CHDs but lives pretty much day to day without limitation. She will probably need surgery at some time but hopefully not until well into adulthood. I and the medical profession do not class her like a child on the list for a heart transplant, struggling every day. There is a massive difference.
I can't see how those with a diagnosis of autism lower on the spectrum would affect your child. No one thinks all children are the same with it. It might even help because the more affected by a condition, the more likely money is to be ploughed into research.

My two are severly autistic non verbal need a carer 24/7. However I have met girls on the autism spectrum who are verbal in mainstream school and do everything you have mentioned. We used to live next door but one to a little girl who was diagnosed with autisic tendancies. When she started secondary school she was able to go on the bus alone after a few weeks of her brother's girlfriend doing the route with her. I seen her mum a few weeks ago. She told me she was at college and passed her driving test. She also goes away sometimes with friends or sometimes her boyfriend. She is still quite immature for her age though and doesn't understand why she never gets picked after a job interview.

Look at the likes of Mel Sykes and Christine McGuiness. You wouldn't think it to look at them. But I'm sure they did all that growing up. Girls can be a lot harder to diagnose. Because they can have obsessions with people. My daughter does but she is obviously autistic.

I wouldn't sit and judge another child's diagnosis and compare my child to there's.

And also, hats off to everyone raising any 'flavour' of neurodiverse child, it's bloody hard work.

Indeed. It really upsets me that everyone dismisses my autism because I'm clever, articulate, social and know how to use a computer. But I've never been able to hold down a job, failed to get any qualification (despite IQ of 133), have anxiety meds coming out of my ears, and have never had a day when I haven't contemplated suicide. But according to this thread I don't really warrant my diagnosis. It makes me want to weep.

Exactly. A doctor didnt come up and diagnose them on the street, they have had symptoms which led to a formal diagnosis which is as relevant as any other person diagnosed with ASD.

@user1188 to be honest I'm finding it hard to catch your meaning. Each time one of your statements is challenged, you say that you didn't mean X, you meant Y. Then someone challenges Y and you say no, you meant Z. And so on.

Please could you break it down really plainly?

Indeed. It really upsets me that everyone dismisses my autism because I'm clever, articulate, social and know how to use a computer. But I've never been able to hold down a job, failed to get any qualification (despite IQ of 133), have anxiety meds coming out of my ears, and have never had a day when I haven't contemplated suicide. But according to this thread I don't really warrant my diagnosis. It makes me want to weep.

You sound a bit like me (but brighter). Never diagnosed but my parents suspected something was 'wrong.' I never quite got my shit together, so to speak.

As the mother of two young adults at different ends of the autistic spectrum l agree with much of what MonkeyMindAllOverAround said. Surely this is what parenting and education is about. We are trying to prepare children for the adult world. Of course we should make allowances for disabilities and, as far as possible, special arrangements should be in place. However, with the best will in the world, this is not always possible. We have to recognise this and prepare our children for this. Of course, some autistic people are so disabled that this will never happen but this does not apply to them. In the end, we live in a world that is not always able to adapt to us. Life skills and rules are vital to counteract this, especially for those at the more able end of the spectrum.

I do wonder what people like the Op think they are going to gain by minimising the struggles of others. How does that help you at all?

it’s not a race to the bottom or a game of top trumps

@Verbena17 autism is not caused by vaccines.

@AllOfThemWitches absolutely this 👏