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.

Lots of people with different diagnoses are vulnerable. But we don’t all give them the same diagnosis because they are vulnerable.

How about these high functioning (ie high IQ) autistic girls with severe chronic mental health difficulties keep the diagnosis of autism, and those with ‘profound autism’ get a new diagnosis with a different name? Is it you don’t want to lose the autism diagnosis? Or why the objection to a split so ‘autism’ more closely reflects your daughter’s needs?

Blu is proving all your points beautifully. Don't let her upset you.

The part where you talked about how they're lives are normal based on the brief glimse you had, and complained that that somehow took away from your son, and the implication that they should not be called autistic because they don't have all the same symproms, as far as you know, as him.

My child is 6 years old and there's been a sort of question mark over him since the age of 3. We're now on the pathway of getting him officially diagnosed. He's mostly very happy at this moment in time. My worries are mostly about his future growing up neuro-diverse, which is why I think it is important to have that diagnosis in place, before the teenage years especially.

He's not taking away funding from more severely disabled people. He deserves to have that information/help at school and to understand himself fully.

The problem is that the word 'autism' covers so many potential situations and each person's understanding of what autism is and what it means varies so much. So without labels such as "high/low functioning" "severe autism" etc.. it's hard for parents to describe children on the spectrum without going into great detail about thier child's individual needs. I know others will disagree but I do think the lack of socially acceptable language to describe the spectrum is the problem here.

AnorLondo

”Please, you stated this thread with the whole purpose of devaluing the condition of the girlsnin your OP. If people are getting defensive it's on you, and probably what you wanted in the first place.”

Exactly

Your son is no more worthy because he was fortunate enough to get an early diagnosis.

As we’re playing need to trumps. My daughter has been hospitalised countless times so many times I’ve lost count , in high dependency and has had made serious attempts on her life needing hospitalisation too.

Is she worthy enough yet?

Can you not see yet how ridiculous and goady this thread is.

The op is not being inflammatory -

She is not devaluing anyone’s hardships due to their autism - however I will say that although some high functioning children and adults with autism have severe anxiety IT IS TREATABLE

Those with autism with LEARNING DISABILITY is permanent, untreatable and unchangeable

The op although she hasn’t said it is easier if you are managing someone high functioning she is within her rights to hold that opinion as are others

If you have experience of both then you’ll also reach a conclusion (it’s ok btw to reach a conclusion)

The pain, suffering & worrying parents go through when having a child with a life long learning disability is quite frankly off the scale. It’s not comparable to worrying about your NT kids it’s much much worse.

To be clear

ANXIETY is treatable not autism!

Oh and the misery is compounded by knowing the social care services in this country are appalling and that is mixed with the fear of who will look after your poor child when you no longer can…………

I don't see my son as fortunate to get a diagnosis so early. It was absolutely obvious. His mental age was that of a baby. That's why he got a diagnosis that early. I was told at the age of 2 he would never lead a normal life and he never will. Much like your daughter.

She is one of the many children I was trying to stand up for in the first place. Your daughter is one of the children I am trying to stand up for.

Shame on you.

I think you put that really well @booksbooks8, thank you.

If I would add one thing, it would be to say that I absolutely appreciate that fear of ending up abused, imprisoned, sectioned etc due to misunderstanding. Perhaps I am guilty of not expressing that sufficiently. It is terrifying. I have often feared it would happen to me. I have younger children to whom that applies. Those DC need support. I think @user1188 has done a better job of expressing her understanding and I think I could do better too.

If I were add two things it would be to say how vanishingly rare it is for that second group of parents to express any understanding of the fears that I have about my older daughter. It feels laughable to me to worry about myself or my younger kids next to her issues. If they could say that they understand and appreciate our fears, that would be massive. Instead @Blu3Salv1a says I don’t need to advocate for your child and I won’t be She fears that her daughter may be abused in inpatient care, but if my daughter, who will be in care, is abused she won’t ever be able to tell me, and parents like @Blu3Salv1a offer no compassion. @AffIt used slurs about learning disabled people in a similar discussion, albeit not on this thread. I don’t understand why they feel so threatened when we advocate for our DC.

I don't think late diagnosis correlates with severity, though. DD1 was diagnosed at 15. She had been in special school since age 4, will never live independently, etc., but because she has a brain malformation and learning disability, it wasn't seen as necessary to work out if she had ASD too. In 2020 she completely imploded. Hospital admission in January 2021 for an eating disorder, and under the psychiatrist ever since.

DD2 was not diagnosed until 11, despite me flagging it at 18 months. She 'coped' in mainstream (with 3 school changes and a period of home ed) until year 10, at which point she completely imploded and ended up out of school altogether. An EHCP was put in place and she now goes to a special school. Even 3 children in the class and a TA isn't enough to get her in full time yet.

Girls are often diagnosed very late because they are, generally, less external with their needs. Even when they meltdown, it's seen as a 'cute tantrum'.

DD1 is quite unusual for a girl and is quite explosive with her dysregulation. The mask truly slips now and it has been so much easier to get support now that it has.

I absolutely agree and I apologise with the 'early diagnosis' term. That was wrong. I can see how it makes no difference.

However I will say getting an early diagnosis means no way you are lucky and fortunate which I have been told twice on this thread. It means there are obvious signs. It means your child at a young age has not hit many if any milestones.

It doesn't mean that we don't battle for our children though. We go down a different path but we still have a huge fight on our hands - I said earlier in the thread that I had to move house in order to get a place at our local sen school. I've witnessed parents lose their friendships because one child got a place and one didnt.

We are in no way lucky, our journeys just started earlier.

I’m awaiting a diagnosis for my son. His school has described him as “high functioning ASD”. I
know it’s a controversial term but he is high functioning in many areas. He’s nearly 4 but his reading age is that of a 6-year-old. He can do his times table. He’s fairly social and loves interaction with other kids (as long as it’s on his terms). However, he mostly eats beige foods and has textural/sensory issues. He bounces and flaps when he’s excited. He still wears nappies out in public as he refuses to use the toilet without his toilet seat (he’d rather stay wet). He’s also scared of the flush. Our insistence has led to constipation and other stomach issues so we’ve taken a step back. He hates even a drop of water on him and refuses to drink from a cup for that reason.

To me, he’s obviously on the spectrum but my husband would rather use the term asperger’s because he thinks the diagnostic criteria for autism is too broad. He also sees a lot of similar traits in himself but wont look into it further as he sees himself as Asperger's, not autistic. I get it. At the same time, our marriage is tough sometimes. I feel like I face things alone because my husband has hyperfocused on a new hobby or interest and can’t pull himself away to watch a film with me or socialise with friends. Our house is cluttered with collectibles and multiple books on the same subjects. He did very well in school and has a degree, job, car, etc. The struggle is in close relationships behind closed doors.

@AffIt please accept my apologies, I have mistaken you for @Affery who is the one who used the slur.

No worries! I was a bit taken aback, I must confess...

Thanks for understanding- I wish there was an edit function 🫢

Anxiety is not treatable.

You are lucky because with an early diagnosis you get the care your child needs early and when needed and your child isn’t forced into crisis. You don’t have to battle for diagnosis, school support, care and adjustment for need and adapted care without a diagnosis whilst trying to keep your child alive.

I had to battle for support, care and adjustment pre-diagnosis. I have also had to battle post-diagnosis. The only way the diagnosis really made a difference is after diagnosis CAMHS would say ‘that is due to her autism’ then discharge her without treatment.

You also don’t get Mumsnetters starting unpleasant threads saying there is no need and you’re just jumping on the autism
bandwagon.

The idea that early diagnosis means you don’t need to fight for support is laughable.

Shelefttheweb
I have too but things are improving. CAMHs stopped trying to force treatment geared towards NT children onto my daughter and adapted for her autism with her diagnosis. It has made a massive difference.

Give it time. Professionals are becoming more autism aware and training is being rolled out.

The fight is bigger and harder without diagnosis.