To ask if it was worth getting yourself or your child diagnosed with ASD

[whatmorecanyoudo]

After forms, referrals, long waiting lists etc we finally got our diagnosis for our DC yesterday. We were basically told all their challenges which we already know, we will be sent a report of these in about a months time and were sent on our merry way. No additional support apart from being told to talk to the school about what they can do to offer support.

Was it really worth it? I now have to think how to explain the diagnosis to an already very anxious child (and at some point to the wider family). I know I am probably just a bit shellshocked by it all and, of course, I know really it is important to truly understand what is going on for DC.

Any positive (or negative) stories on the benefits of getting a diagnosis would be hugely helpful, or advice on what to do next from those with experience of this. Thank you xx

My sibling found a diagnosis life changing in understanding themselves and the problems they thought they had. However there is also a bit of a subculture online of people with autism that is very divisive - everyone is against us as its NT vs not, the world is set up for us to fail so why should we try etc. I think a lot of it is unhelpful so if they are the age to Google and especially for social media I would get ahead of that, focus on the positives and that people with autism succeed in many fields. (and not just the stereotype ones of maths and science!)

Changed nothing for us. Discharged by Paed. School did nothing. I'd already read every book I could get hold of to inform myself and try and help him. We've just got on with it, since then.

For my DC it made zero difference at primary, they gave zero support and had zero understanding.

At secondary it did make a slight difference, got extra time in exams and a but of support.

At University though? ~30K worth of DSA support - laptop, mentoring, software. Guaranteed on campus accommodation. Contextual A level offers. Extra time in exams, smaller tutorials.

And on personal level we all know where we are.

This.

For anyone in a similar situation please don't get fobbed off by schools that their needs are being met. This applies across the board for ADHD, DLD etc..

A diagnosis is ammunition for an EHCP and it's been a game changer for us. We still have SALT input unlike others. The school has been forced to make reasonable adjustments and her grades have shot up and she's passing everything.

By far the biggest impact is the weight off her shoulders and her anxiety is no more because she no longer struggles.

I would encourage anyone to push for a diagnosis.

I think it's worth it, she will have autism regardless of being diagnosed or not if she has it.

Having that diagnosis can help with understanding when older, when I was at school and university it helped in terms of support, as an adult support does dwindle away but I recently got a job via a scheme to help autistic people get into employment

Rather than focus on the practical help to consider whether it’s worth it.

i was diagnosed at 24. I ALWAYS felt like an outsider, like I was odd and different and couldn’t understand why I didn’t fit in. My entire school life, there wasn’t a single day where I didn’t beat myself up for being different and not being able to be the same as others. My self esteem was shot, I had no confidence, I over thought everything and tried to force myself to do things that I thought I should be able to manage as a “normal” person.

I stopped all of this the day I was diagnosed. I am this was because I was born this way, I am exactly who I am meant to be. I’m not a failure, my brain just has other strengths. When I learnt about autism, I found things considered a strength and when I tried these things out I found I was good at them and managed to chose a career that played to these strengths.

I am progressing at work, have a happy marriage with a man who understands why I meltdown etc sometimes/atruggle with every day things, have healthy friendships.

I would have none of these things without my diagnosis.

Thank you for all these replies. They are really useful. So good to hear some of the positives.

@whatmorecanyoudo
services like speech and occupational therapy, short breaks .help in school form teaching assistants.
It is easier to get an EHCP assessment. You don’t need a diagnosis to apply for dla but medical evidence makes it more straightforward.

For me it was (I am 40 and it puts a lifetime of 'am I stupid or just weird' thoughts into perspective). DS2 is in Yr6 and DH isn't sure it was a good idea as DS2 says 'I'm autistic and weird' and w
encourages other people to say the same. The thing is, they'd have called him weird even if he didn't have a diagnosis. May as well own the label and make it your own <shrugs>

Also, we've had no help at school. However local services have offered places on social skills courses, which have been great and helpful.

I get what you mean.

You don't see it so much with other conditions — "I think my child has migraines/arthritis/OCD/epilepsy, is it worth having her assessed?" — and a lot of the time it might be considered neglectful to suspect a diagnosable condition and not get them checked out.

It's a little different because often you do have to push hard for an autism assessment, and through my own experience I understand the concerns about losing access to services, and about stigma and self-perception. But it still seems odd to me that getting an assessment (and potentially a diagnosis) for a child showing signs of a potential neurodevelopmental disorder often seems to be considered an optional, discretionary thing that parents might opt for or reject on behalf of their child, when with most other conditions that wouldn't be how it would be thought of.

My son lost SALT input due to diagnosis, but my other son got help faster via CAMHS due to it. There are positives and negatives in the short term. BUT, not getting a diagnosis IS devastating in the long term. I don't know a single person who was diagnosed or who self diagnoses as an adult, who does not wish they were diagnosed as a child.

I suppose this is one consequence of the neurodiversity model, of seeing it as a difference not a disorder, and of talking about identifying autism rather than diagnosing it (and consequently, the rise of self-identifying as autistic without a diagnosis). Those who see autism as a difference rather than as a neurodevelopmental disorder might think it's only natural that it should be treated differently from things like arthritis or OCD, and that it's not neglectful to sidestep the medical diagnosis pathway.

@ClumpingBambooIsALie I see autism as a neurological difference and find it useful to describe it as such in layman's terms, but in medical terms it is a disorder.

While autism is disabling enough to make it officially a disability, I think diagnosis is helpful and beneficial. It offers legal protections that are often needed.

Pretty much of the same mind as you orbital.

While I've ever sympathy for people unsure as to whether an ASD diagnosis will make things better or worse, and for people who can't or haven't yet been able to access assessment or have only just started to suspect they may be autistic, I've little time for self-identified autistics who reject diagnosis and campaign for it to be seen as only a difference, not a disability. You don't get a diagnosis unless it causes problems for you, so if you're not disabled in at least some way (even if purely in the social model sense) then you're not autistic IMO. And for a disabled child to have to go through life without personal, family or official acknowledgement of their disability can be bloody hard.

*every sympathy

(I know that's a slightly bastardised version of the social model, but what I mean is things like, if you're not even affected by autism in such a way that removal of social things that accommodate for your difference would make life difficult for you.)