Is anyone the parent of a child with asd and not seeking a diagnosis?

[coodawoodashooda]

Not looking for a bun fight. Just trying to sort out my thinking. Anyone with any of their own insight that they'd be willing to share?

I wish I hadn't been assessed. It took me 12 years to accept it, my peers were told without my consent and no support was offered. That was 25 years ago though, I hope things have changed.

Both of those examples are better than the flip side which I’ve seen and heard

We didn’t invite Bobby to the party as he always breaks things

We don’t have so and so over anymore she kicked our dog and yells and screams and her mum does nothing about the behaviour

Either way the child will be labelled and sometimes the additional needs “label” is better than the alternative

I agree but I don't have any of these issues to contend with.

I found having the diagnosis also helped with practical steps like getting him extra help and a one-to-one TA at school as well as applying for benefits like DLA. I think those things are possible without a diagnosis (?) but it certainly helped open the doors for the help he needed.

All of the time in our school gate community I hear things like, 'Bobby is coming for a play, he is autistic', or ''Amelia and Jenny fell out, Jenny has adhd'. It makes me very uncomfortable how communities take that information and use it to judge. In spite of lots of kindness nobody ever uses the label as a compliment.

A diagnosis is not meant to be used as a bloody compliment. It's used as INFORMATION and here you have given absolutely perfect examples of that.

I can’t see how you’d know he had autism if he wasn’t diagnosed by a qualified doctor.

I really don't think you can underestimate the benefit a diagnosis gives to the individual. Because I have autistic children I know a lot of adults now realising they too are autistic. They've done well, sure. But for most of them it's been at a cost and they all describe that lightbulb moment when they've been reading up on their child's autism and thinking "shit that's me!"

They've always known they were different. But they thought they were lazy, weird, depressive, anxious, unloveable, etc. They gave themselves plenty of labels, none of them good.

Now they know they are autistic, they can use that information to empower themselves. They can stop trying to do everything the neurotypical way and kicking themselves if they fail. Sometimes it's not even about help others are going to give you but help you can give yourself.

Nobody knows my child is autistic unless they need to know or they choose to tell them. I mean what’s the alternative? School tried to force them into an environment that was traumatic and punished them when they couldn’t manage it. As others have said.

This was a happy, confident child at primary and then the bomb exploded when they transitioned to secondary. Nobody even suspected autism because they are highly social and an expert masker. It has taken them years to accept their diagnosis but hopefully that will mean a better outcome in the long run. It has definitely opened doors to support we’ve needed that would otherwise remain firmly closed.

Just wanted to add, that I’ve never had to disclose my autism diagnosis if I haven’t wanted to. I’ve applied for jobs, got them, and worked there for years without telling anybody. It’s medical information, it’s up to you whether you disclose.

More recently, in different jobs, I’ve told people and haven’t had a bad reaction. It’s actually meant I can ask for simple adjustments that make my life a lot easier.

I’m in my late 30s and was diagnosed when I was 7.

I definitely knew before he was diagnosed! It was crystal clear to me, going to the dr just seemed like a formality to ‘confirm’ and make it official more than anything.

Do you really work in a school?

Because in every school I’ve worked in over the last 20 years, having a diagnosis (and ultimately, having an EHCP, which is tremendously difficult to get without a diagnosis) is often the difference between a child thriving or not.

Schools cannot just magic up funding to provide tailored support
to children. Teaching assistants cost money. Specialist external support is often only accessed for children with a specified need.

OP, I would never tell a parent that they MUST seek a diagnosis for their child. But I would strongly advise it. A diagnosis opens doors to support that otherwise remain closed. I would also add, as parent of a young adult with Asperger’s, that understanding his diagnosis as he has grown up has helped him immeasurably. There were some rough years, but as a young man he is now armed with self knowledge and strategies for life that he just wouldn’t have if he hadn’t been diagnosed with autism as a child.

I would say it depends on how much the traits of the suspected ASD impact day to day life and educattion.

I have three daughters 13, 12 & 7.

My 12 year old shows mild ASD traits and after discussing it with her she has opted not to go on the list for an assessment.

My 7 year old was diagnosed with ASD at 3 and goes to a specialist school. Her traits are much more life restricting and coupled with severe learning disabilities, and global developmental delay. (So think and 18 month old in a 7 year olds body).

@PeonyPansy I understand what you are saying but I think I would have come to the same lightbulb moment at a similar age with or without my diagnosis 12 years beforehand. Possibly earlier as I wouldn't have had so much anger and complete rejection of the label. My sibling came to the realisation that they are also autistic in their twenties without a diagnosis.

@SteveHarringtonsChestHair

• Bollocks.

I work in a school and I see many children both with and without diagnoses. They are all supported through their own particular challenges and having a diagnosis doesn’t make them any more likely to actually come into school and stay there.

If they need one to one support or special adjustments made etc of course it would help, but if they are achieving well and are streets ahead of their peers, having taught themselves to read at nursery age and being “that kid” correcting the teacher at the age of 7, making them feel that there is something “wrong” with them isn’t always a positive thing.*

Are you actually staying here a) you're a school SENCO
B) it's preferable for a child to be left ignorant and Uninformed of their conditions because they've inadvertently taught themselves to mask in school?

The Army, Navy and RAF are desperate for recruits do you not think that they have good reasons for not allowing people with an autism diagnosis in.

Why would you decide not to get a diagnosis for your child just because they might not get in the military?
If they did grow up and join the army they'd still be autistic just in danger because no one would know.

Our DD is autistic and whilst I would be sad for her if she couldn't follow a certain career path it wouldn't stop me getting her assessed. Many if us can't do certain careers I wanted to be a singer but problem is I can't hold a tune!

I can relate to what @SteveHarringtonsChestHair is saying - there is no way a diagnosis and subsequent label would benefit my dd at this stage. She would be horrified. She's not ignorant or uninformed at all, she knows she thinks differently from her friends, but she says "mum that's just the way I am and I'm fine with it".
Every child is different. A good senco knows this.

Some genuine questions/points. Autism is a spectrum, and I am constantly told that “if you’ve met one autistic person you’ve met one autistic person”, so let’s say you have a “high functioning child” who is shy with some sensory sensitivities.
You and they are aware they don’t like loud noises.

How does the word “autism” help you and them and the world understand them better, if “autism” in itself doesn’t particularly mean anything? How does this self knowledge benefit them beyond the knowledge that they don’t like loud noises which presumably they have already developed coping strategies for? Sure you could tell other people they had autism but you could also tell them they were shy and didn’t like loud noises. And surely a teacher should treat a shy child with the same kindness as an autistic one? Or is that wrong?

Unfortunately people and institutions do discriminate against people with disabilities in all sorts of overt and unconscious ways so I can see why it’s not a no brainer for some.

@Jujujuly

Nobody is diagnosing a child with autism because they don't like loud noises and are 'shy' - the diagnostic criteria are more thorough.

Thank you very much for this.

That’s just an example though - I don’t have any personal experience but I guess I mean what does the diagnosis give you beyond identifying the specific issues themselves? As it’s the individual’s issues that are relevant given the massive variation between individuals?

Hi you should still get education support without diagnosis if schools LA are following government policy/ no doubt there own policy too. Absolutely NOWHERE is it written that you need a diagnosis to get support at school. If anyone says different then tell me where it is. The policy is it should be based on needs not on diagnosis.

We have some friends who buried their head in the sand about their son who was showing signs of asd at four, if not earlier. He was academically brilliant, but as he got into secondary school was showing increasingly strange behaviour and was very socially isolated.
He had a breakdown at university, has been in and out of hospital and has received an asd diagnosis at 24 and a schizophrenia diagnosis at 25. He is now in hospital and it looks like he will never be able to lead a normal life, hold down a job, relationship etc.
A friend's son who was in the same school year as him has said it was criminal that his parents never went for a diagnosis, but I think it was mostly denial on his father's part, who is so obviously asd himself (as were his father and brother).

In order to be diagnosed one is required to have “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” which “limit and impair everyday functioning”. If someone’s only difficulty was loud noises they wouldn’t be diagnosed.

If DS has difficulty with loud noises it is also naive to think he wouldn’t benefit from any support. A sensory OT assessment and ongoing therapy is highly likely to be helpful to him.

@MinervaTerrathorn your diagnosis sounds like it was badly handled and I can understand in that case it probably didn't benefit you. The people I know have all realised in their late 30s and early 40s that they probably are autistic. So they've had decades of feeling not good enough.

Given we're much more aware of autism now I don't think you'd probably get to as old as that now I suppose. If a child was really against an assessment I wouldn't force them into it, assuming they were in their early teens. I think having an informed conversation with a child about it is a different situation to just never mentioning it to them. Even without a formal diagnosis, if they are aware it might be a factor that still gives them the opportunity to take account of it. If that makes any sense.