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.

This is about those who can get a high flying career and have the same diagnosis as those who are totally non verbal and not able to leave the house without attendance of another adult.

I hear what you are saying and I agree with you. There should be something more than just autism. No idea what though.

I agree. There are children with autism who will realistically need full time and intensive support throughout their lives and will never be able to live independently. There are children who have autistic traits but will go on to have full time careers and manage to live independently. Yet both are labelled autistic. There really does need to be some reassessment of the blanket term 'autism' for it to be meaningful and maybe needs to be linked to the level of support required to function in society.

I hear your frustration OP and it sounds incredibly difficult, but this sort of question worries me too from a different angle.

My son (17) has friends, can appear sociable, is doing well at school, goes out by himself and is going to university. I now don’t tell many people he has a diagnosis of ASD because of the amount of people who have either doubted/questioned me or talk about how ‘high functioning’ he is.

Now of course he is high functioning in many ways but he is still incredibly vulnerable, it’s just not obvious. He is very suggestible and even self harmed at the age of 16 after someone suggested it to him as a coping mechanism. He couldn’t properly articulate why he’d done it and he was confused. He doesn’t understand nuance and takes things literally, which can mean he doesn’t understand his environment as well as others around him.
He has crippling OCD which is mostly constant intrusive thoughts and not your stereotypical germ related OCD. His OCD is horrific and totally hidden.
He misses social cues, struggles to hold a conversation unless he knows the person well and is interested in the conversation. This means he won’t ask for help if he needs it and can’t start conversations easily, including with medical professionals.

I am not sure what the answer is as ASD is such a spectrum and your son is obviously very vulnerable, but my DS’s vulnerability also petrifies me, especially as he will be leaving home, going to uni and working etc.

Some people have stage 1 cancer. Some people have stage 3 cancer. They both have cancer.

Question for the women diagnosed as adults: did you get your diagnosis for validation of your feelings of always being different?
Do you think it would have helped you to have a diagnosis when you were younger?
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?

I think that it does require some formal differentiation, just like cancer does, in order to give greater understanding of the severity if the condition.

I haven’t read the whole thread but totally get where you are coming from. Dd2 is similar to your DS, she’s 17 and is now at a SEN college that are not meeting her needs. She can’t go anywhere alone, isn’t very verbal and has a lot of sensory issues, she will never live independently and will likely never work (though the aim has always been that she will eventually do some kind of work). I also have another dd who is 19 and was diagnosed with Aspergers when she was 3, she is more able and is now at uni but suffers with terrible anxiety and identity issues, she also has some physical disabilities which probably effect her more than autism does. A lot of dd1’s friends are in the process of diagnosis for Autism or ADHD.

I do believe that a lot more people than we first thought are on the spectrum and for some I can see why they would seek a diagnosis but I also think there are a lot of children/adults who would not benefit from a diagnosis. I believe I m on the spectrum myself, I probably would have benefited from a diagnosis as a child but not much was known about autism in the 80’s, I don’t think a diagnosis now would benefit me at all because I wouldn’t want to be treated any differently and wouldn’t want medication, my friends would describe me as quirky and possibly a bit annoying, I wouldn’t really want people to say ‘oh, that’s because she’s autistic’, i am who I am and a diagnosis will not change that, it just puts a label on it.

I have 3 children who have ASD and they are all very different.
My eldest seems very capable but can't speak to anyone he doesn't know.
Won't go on the bus or shops if he has to speak to anyone.
Food is a nightmare and is clothes.

My middle child is a lot more complex and is in a sen school with learning disabilities and hypotonia and dcd.
He needs a lot more care and support with even the basics.

My youngest has very poor fine motor skills and can't dress himself very well.
He is extremely violent (which My other two is not).

I do feel people eyeroll internally when I mention my children's Autsim though.

Is it ‘such a spectrum’ or it is that your son and OPs son actually have different conditions? And giving different diagnoses would actually better reflect their respective needs? Such a split would not be ‘your son better, OPs son worse’, it would be ‘your son these needs, OPs son those needs’.

I actually think this is the kind of division and debate the current government loves.

The issue isn’t children and adults on a spectrum being so differed.

The actual issue is fear of access to services and access to services.

If diagnostic and support services were properly funded, properly available and accessible for everyone who needs them this debate wouldn’t be happening.

That they are scarce is when the factor of worthiness starts to come into minds.

Hear hear

Exactly

I absolutely hear you, both as a mum of two children with complex needs and an SEN teacher.

I am autistic. I was diagnosed last year at 42. If you met me, you probably wouldn’t tell. I extremely good at masking these days, I have two degrees and I run my own business. But a diagnosis as a child would have prevented several breakdowns, improved my mental health throughout my life and given me the tools to make my professional positions work without burning me out. DS is also autistic and like me, you probably wouldn’t know if you met him. However, for both of us, in the areas where the autism is disabling, it can be crippling and we both need help to navigate certain areas of our lives. I have a friend whose DS is non-verbal autistic and there is no doubt that the broad spectrum is unhelpful as I always feel a bit awkward discussing our experience of autism in conversation with her as she deals with a much more disabled child, who as PPs have said, will never work or function without assistance. That said, I would never choose not seek a diagnosis for DS as I know how much it will help him through education and beyond. I have though, accepted that I may well have to go down the private route as he wouldn’t meet the threshold for the criteria that are coming in.

@YetMoreNewBeginnings you're absolutely right.
Having is fight more the small pit of money distracts us from the real question of why its so small.

And absolutely this.

I agree with you completely. It is going in the wrong direction. The need for inclusion has just gone bananas and kids are expected to be perfect, no flaws. Any flaw is a diagnosis and absolutely not the fault of an imperfect human, imperfect parenting and just a personality type. This is robbing kids who have severe need of support, at an alarming rate.

Autism is not a ‘condition’!!!

This is the crux of it.

My son has a diagnosis of Aspergers, he was diagnosed at age 6, he was in mainstream education, we were constantly being told that he was being rude, naughty, aggressive, uncooperative, melodramatic, etc etc. I raised questions about learning disabilities and was repeatedly told that as his diagnosis was Aspergers then he couldn't possibly have any learning disabilities and we were denied a formal assessment by an educational psychologist.

By the time he was in yr5 he was in permanent isolation at school being taught by a TA although there was 2 other members of staff (1 was the senco), eating his lunch with just a TA for company, going out to play with just a TA. He was being discriminated against and victimised. We were still querying the possibility of learning disabilities and we were still being told he couldn't possibly have learning disabilities because his diagnosis was Aspergers.

Towards the end of yr5 he was permanently excluded.
He moved to a specialist independent school for children with complex needs in yr6 and remained there for 7 years. He was 15 when he got a diagnosis of learning disabilities.

Now in his early 20's Aspergers cause many of his problems, his learning disabilities have made getting a job in his chosen field very difficult. DS was inconsolable last night because he feels that nobody will take a chance and give him a job.

Yet again his self esteem is dropping like a lead balloon and we will be left to pick up the pieces because his primary diagnosis is Aspergers.

I'm not saying you can. I'm saying you don't need to. I'm saying that child is still vulnerable, just in a different way. But again; comparison is not needed. You do you and all that.

@WilsonMilson - are you trying to be goady, or do you truly not know what you're talking about?

Quirks?
Mild traits?

FFS.

My child is independent in terms of friendships, going shopping, keeping himself safe when he's out. He also has a diagnosis of ADHD. It was important to get diagnosis to support him with his education at school, so that hst he can leave school with a basic education. Without support, the education system is not accessible to him. And then he would find it hard to get a job.

Yes there's a huge spectrum. Yes some kids will have much higher needs and may never be independent. It doesn't mean that my child shouldn't get a diagnosis to enable them to access education.

Having said that I do know what you mean about the same diagnosis for some who will be never independent being the same as those who will lead independent lives. It does seem odd.

Are you calling ASD a disability?

Are you suggesting it isn't?