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 don’t agree, it’s based on care needs I’ve applied for 2 children (2 new claims one renewal) you could have a child with asd and no extra care needs not all autistic children require extra care anyway so diagnosis doesn’t mean much

DLA and carers’ … I work in this area. You can get it without diagnosis but it is easier with simply because a diagnostic report provides professional evidence of the issues.

Diagnosis isn’t an automatic eligibility either, it will still depend on the evidence of care needs.

I get what your saying on this so maybe support shouldn't be the word? It adds weight to the argument for your child to get extra support, that they then avoid giving!

Although I have to say we have eventually used DD inheritance with her knowledge to pay for private school and they are much more responsive and put measures in place straight away. But would probably not quite get it if she wasn't diagnosed.

For example she was getting extremely anxious about one particular very small thing and had got into a anxiety cycle about it but anxiety often leads her to self harm, I let the school know and they immediately talked to her and it was all resolved. They and I would have thought she was being ridiculous or awkward if we didn't know she has autism.

I've never really experienced negative responses to her diagnosis (not that we tell everyone) apart form the usual she makes eye contact and she doesn't look autistic and my all time favourite everyone is a little autistic!!! Always said with kind intentions but still infuriating.

But how do you get financial support in place without that diagnosis??

You don’t need a diagnosis for much of your list. EHCPs and DLA are based on needs rather than diagnosis. Carer’s allowance isn’t related to diagnosis either, but is based on whether you care for someone receiving DLA for more than 35 hours per week. Discounted tickets are often linked to benefits or things like an Access Card. You can get a max card without a diagnosis, and a bus pass can sometimes be given without a diagnosis too.

One time a diagnosis is helpful for school admissions is if you want an autism SS or ARP who only admit those with a diagnosis.

This is true in theory, but in reality having a diagnosis helps a lot.

My daughter also had a 1:1 and ehcp before diagnosis her diagnosis changed nothing other than “knowing” for sure she isn’t able to get into a Sen school even with these so don’t assume it changes much, hasn’t for us. I’m not getting my son diagnosed.

you could have a child with asd and no extra care needs not all autistic children require extra care anyway so diagnosis doesn’t mean much

I agree a diagnosis isn’t essential for applying for DLA but ^^ is unlikely as in order to get a diagnosis one requires difficulties that “limit and impair everyday functioning”.

Why does no one tell you these things...

We have a diagnosis. The reasons for this are:

• support in school
• Helping family to understand
• Helping our child to understand themselves
• giving them the legal right to some reasonable accommodations in the workplace in the future

Same as spinning - got DLA without a diagnosis and a 1:1, social skills group, time in integrated unit in school, visual timetable, EHCP... an 'autism' diagnosis wouldn't have got us any of that as an autism diagnosis did not mean she needed any of that -her specific presentation did and for that we needed specialist assessments. The diagnosis came later and nothing needed changing as a result.

I get DLA for teen dd without a diagnosis. We had a support worker for a while, she suggested I apply and included her own statement as evidence. I knew things were bad but I was shocked to get it. and vindicated after a horrible paediatrician told me it was just my poor parenting when dd was little.

It might be helpful to them when trying to understand why they find things difficult that others find easy. Or to explain why so much social stuff is a mystery.

I know a number of autistic adults who just spent the first part of their lives with their struggling unacknowledged and feeling rubbish about themselves because they knew they were different but didn't know why.

Do you have a link for this please?

@MonkeypuzzleClimber
It’s far more interesting to hear if anyone with a diagnosis themselves regrets it? I’ve not heard of anybody…
I posted above that I regret it. I was years away from being ready for a diagnosis or open to the idea. I could have pursued a diagnosis in adulthood had I chosen to.

Big mistake not too. Autism brings a higher chance of mental health difficulties. Struggles to identify and handle emotions can have a big impact in the teenage years. Having had 2 children that have had serious struggles including anorexia which is linked to autism I wish I’d got them diagnosed earlier.. I wish I’d had mine earlier too, would have made life so much easier.

This ^^ As an autistic adult who was only diagnosed three years ago, I can 100% say that a diagnosis as a child would have completely changed my experience of school.

www.neda.org.au/migration-and-disability-factsheets#:~:text=Migrants%20and%20refugees%20with%20disability%20(and%20their%20families)%20are%20often,related%20to%20an%20applicant's%20disabilities.

It doesn't help you access mental health services - you get dismissed as 'due to their autism'.

My mental health was significantly affected by my diagnosis and I became anorexic and started self harming two years later. That may have happened anyway, I don't know. I do support diagnosis if an older child or teen is open to the idea but not if they are not.

And what about after school when she joins the workplace? There's no EHCP then, accomodations are made under the DDA

That’s true I took my daughter to the drs as she wasn’t able to eat (physically she was struggling to swallow food) as soon as I explained she was autistic the dr said she was just attention seeking!

My daughter DOES have a diagnosis I said I’m not getting my son diagnosed he doesn’t require any additional help at school doesn’t need a ehcp, doesn’t require a 1:1 why do people think all autistic people need help at school?

I think parents should seek an assessment, but unless you are in Northern Ireland it is now the Equality Act 2010, not the DDA. And a diagnosis isn’t required in order to be covered by the Act.

Autism is a disability and it’s illegal to deny treatment because of it. My children have had extensive treatment, more than they would have without.

Diagnosis gets caretailored and also can give you time to learn to handle and identify emotions better, understand why there are struggles which lessens self criticism….