What's the point in ASD diagnosis?

[Swalewhale]

I have a strong suspicion DD aged 7 is on the spectrum.
After googling, I see the typical route is to go the GP and then go on the waiting list for assessment.
My question is, if you have gone through this process, and they eventually confirm it, then what? How will this diagnosis benefit our lives? It's not something they give you medication for, you can't fix it so does it change anything?

I want to be talked into getting her diagnosis but I'm not sure why. She is quite sensitive so I don't want to put her through unnecessary assessments or to make her feel like she's different.

It unlocks other support that does make a difference.

As someone diagnosed as an adult I bloody wish I’d known as a child. My entire childhood makes sense to me now, but at the time it was awful and lead to some really low points mental health wise. I don’t think I’d have had any different support etc, but if I’d known then at least I might have understood what the bloody hell was going on occasionally.

Unlocks understanding for you, her and other people.

It’ll help her understand that any challenges she faces are due to a medical condition, not a problem with her personality (as my mother treated me)

It gives them a lot of protection against discrimination as they get older and unlocks other support/accommodations.

It doesn’t always unlock extra support I didn’t get any extra support after dd was diagnosed in fact we was discharged from all services, the support she still has was ones we had before, they wanted to diagnosed my ds but not going to bother

Thanks for the replies. Yeah I think I should do this for her.
She so good at masking, I'm actually a bit worried I'll put her through the whole assessment and they won't recognise it.

Out of interest, what exactly is the support?

It depends on how far down the spectrum she is. Everyone is on there somewhere, there's little point in getting a diagnosis if it isn't going to make much of a difference to how you do things.

However if she seems very different to NT children it will help to validate her way of living (to her not others), ensure she has support at school and help you to understand her way if seeing the world.

My DS was diagnosed as a baby, it was very straight forward and quick. However I know people who've been 'fighting' for a diagnosis for years.

I was diagnosed at 30, same time as my DS. I've had a pretty normal life and don't feel I struggle with anything so I don't need the diagnosis. However it has put past events into perspective and helped me forgive myself for my behaviour (sometimes rude and direct, very shy) at times.

Get the ball rolling. She might have have asd or some other ND trait such as adhd or dyspraxia which can look like asd.

My 3 ds were diagnosed at the age they needed to be - 2yrs, 8yrs and 15yrs.

It was just the right time for them and me. My child diagnosed at 2 is very

I'm autistic and so is my DS. In my experience, a diagnosis makes the phrase 'weirdo' sting a bit less, because you know that it's not caused by an inherent fault in you/your understanding, but simply the way your brain is made.

On a practical note, it has given DS a lot of opportunity for better support provided by the LA, which I am very grateful for.

It's a pathway to support in school.

It may mean she gets support in class, or extra time in exams with a quiet room for example.

Access to work schemes are a thing for those diagnosed with autism and ADHD.

Also, reasonable adjustments have to be made by law in the work place to support her in her work role.

A diagnosis will help her understand herself better, be kinder to herself, give her a better chance of strong self esteem.

As someone diagnosed as an adult I wish I'd known sooner. She will know she's different whether you get her a diagnosis or not.

Being diagnosed may mean you get concessional entry to certain places for her and carer entry for you. A little thing but it helps. She may be entitled to a free bus pass, a rail card, etc. As I say this isn't a big thing but as a family were I've and to quit work to care for my eldest who is on the spectrum every little helps on a very tight budget.

It may mean she is more "looked out for" socially and emotionally by those around her. I'm only just realising and accepting now at 40 that I'm more vulnerable than my NT peers. 😔 I've been abused in every possible way throughout my life. It's a hard fact but true. Would my friends and family have stepped in more if they knew I was autistic and vulnerable? I'd hope so.

Direct payments help people with diagnosis or needs. My son has direct payments and this pays for a carer to take him out 1:1 in the local community. Means he's less isolated.

I'm autistic. My son is autistic. For me I can see no downsides to us both being diagnosed.

As an autistic woman I feel like I've finally found my tribe. I feel a sense of community and support and understanding. And I am finally kind to myself and living my life to what helps me rather than what is expected of me.

Well, how much do you know about ASD other than the traits to look for to diagnose? Girls are much more likely to mask well and a lot of women are being diagnosed as adults now because they were able to work through life learning skills to be able to fit into a NT world. This masking is a lot harder and more draining than it looks.

I didn't get a diagnosis as a child and I never even suspected ASD until well into adulthood. But looking back it put a lot of barriers in my life that simple understanding of the way my brain worked would have improved my quality of life massively, as well as helping me to implement ways of living that worked to my benefit. The difference would have been immense to me.

Your daughter already has the benefit of a mother who suspects ASD and will help with these things, but a diagnosis will clarify her condition when she needs additional support (in an ideal world this would be much more than it is - but without a diagnosis it is nothing).

Sorry, posted too soon!

My child diagnosed at 2 needed to access special school and all the other support a disabled child needs.

My eldest did very well academically but suffered with his mental health and socially. He got diagnosed at 15 because he just fancied knowing. He doesn't need/want extra support but likes sitting exams separately and being able to use a computer.

My youngest will need support because he struggles in mainstream and has already had two bouts of school refusal. He needs an EHCP so the school can accommodate his needs.

The big fight you may have is the way ASD can erode a child's mental health.

My 12 year old niece has just had a diagnosis because she presented with a nervous breakdown. She is now out of school, self harming and in a whole world of hell.

I don't know if an earlier diagnosis would have helped but it certainly couldn't have made it worse than it currently is.

She had been masking epically and she is mental and physically exhausted.

It gives a reason. It helps the person feel they have a reason for being quirky and needing to be different without the guilt. It explains why.
It empowers them to ask for support and to seek support from others with the same diagnosis.

Mentally...not mental

Replace the word label with support

I’m currently going through diagnosis
i was told for years I probably had it by various people but also told I was ‘high functioning’ so no point getting a diagnosis

and that was true until it wasn’t and I fell apart. I couldn’t keep being ‘high functioning’ and the damage to my self esteem is huge, as I tried to explain why I found things so much harder than other people, why I just couldn’t do certain things.

an ASD diagnosis would tell me it’s not just that I’m crap, but that I had a disability I’m overcoming and I find different things difficult. The problem is it’s around 2 years+ on the nhs so after falling apart it’s another two years to get answers.

also at university there was additional help and at work there was additional help, but only for those with a formal diagnosis.
so It would’ve really helped me to get a diagnosis as a child rather than trying to do it now.

It would help with her understanding of herself as she gets older and others understanding of her, if she needs access arrangements in exams it may help. At work she can ask for reasonable adjustments.

I spent a lot of time writing down every single thing I had noticed literally since birth on the forms we were sent before ds's assessment - start making notes now and think back would be my advice, it's easy to forget, write things down as you remember them.

What do school think? DS had a lady in from SEND that observed him and suggested ASD - if the school think she may have ASD you could ask if they could get someone into observe her perhaps? The lady from SEND was very experienced and knowledgeable although not able to diagnose obviously.

7yo DD has very recently got her diagnosis. It's unlikely to make that much of a difference at the moment because she is extremely good at masking unless she is at home but I do worry about when she gets older and social interactions get more complicated. I wouldn't like to have to undergo the 18 month referral and assessment process if we reached the point it became all too much for her.

Hey! I’ve been through this, my son loves his diagnosis and the tests were so subtle that he hardly noticed what was happening. He was about 9/10 when diagnosed your dD will probs be 9 because waiting lists are so long.

the diagnosis makes no difference to his every day life. However, he recently started secondary school and he is on their radar immediately to get the proper support. Diagnosis stops them from being seen as a ‘difficult’ child and understanding and compassion is often offered instead. It will likely also mean dd will be entitled to DLA.

We are currently nearing the end of pathway, fairly confident we will get a diagnosis. Ds is 12. For him this will confirm why he is a bit different, he can access different support. School are already acting as though he has a diagnosis so that won't change either way. He already has an early help assessment in place.

It means that schools and employers have a legal duty to accommodate reasonable adjustments. This can range from not bring disciplined fir displaying autistic behaviour to things like not having to queue at lunchtimes, having time out, rest breaks in exams etc etc.

One benefit of an ASD diagnosis is that your child’s school will get pupil premium for them and can use this for extra support.

It unlocks access to benefits, and not much more tbh. PIP is a bugger to claim and having a diagnosis gives you a tiny bit of evidence that you can use. Even then, they'll reject you repeatedly and you'll have to fight for it.

There isn't any support really, especially not once they reach 18.