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.

You need a letter from a medical professional to access DSA and proof of need from professionals. Which is much easier to get if you have a diagnosis/proper assessment. It provides the funding for a multitude of things depending on need including software, equipment, mentoring, travel costs etc.

I know what DSA is and I know what the eligibility criteria are. An autism diagnosis is not one of them. You have to show you have a disability that affects your ability to study. That is not the same thing as showing you have a diagnosis. You can have a disability and prove it and it’s affect on your study without a diagnosis. Yes, it may be easier with a diagnosis, but a diagnosis is not required.

As PP have said - further support and understanding opens up. Before diagnosis, DS was constantly told off at school, especially in relation to not doing homework and saying he hadn't been given any. His teachers all received a note saying he didn't get metaphorical language and they needed to be literal (e.g. if they said something like, 'polish that off tonight' he would have no idea that meant 'finish this essay for your homework by tomorrow morning,' so wouldn't do it.

At uni he gets faster access to counselling and other support as the stresses of being ND in an NT world can be quite overwhelming. And tutors are sympathetic if he needs a deadline because he is struggling with other things. As a result, his grades are very good, and reflect what he is actually capable of.

It also helps him. And me. I'm much more aware I need to teach him things other people take for granted, and also make sure he doesn't pathologise his normal ranges of emotion (eg explaining it's fine to feel sad if your friends are all busy on a Friday night and you're home alone, or stressed if you have two simultaneous work deadlines, or assume NT people have no issues.)

When did you actually last apply for DSA? We went through the process a few months ago and without a full report and sus gnosis could not have provided the proof.

Personally, never. I helped DD2 apply a couple of years ago. And some friends’ DC over the last couple of years with the last one being in August, including one without any diagnosis earlier this year. Just because you couldn’t prove your needs without a diagnosis does not mean it’s not possible for others. An autism diagnosis is not required in order for one to prove one has a disability that affects your ability to study.

Would you mind saying which book this was, I am interested!

My daughter was diagnosed just at the end of lockdown. She was fast tracked as she was due to start secondary school. Its more support for her she needs extra support in school and just general day to day things. We also found clubs that i take her to and I've fpund support from other parents. We've often thought our son has autism but it doesn't have an impact on his life like it does my daughter so we haven't bothered looking into it for him. It really depends on how you feel your coping as a family.

We got him the first three Libby Scott books.

www.amazon.co.uk/Collection-Books-Libby-Rebecca-Westcott/dp/9124133744/ref=sr_1_2?crid=13OULQC0U19BS&keywords=can+you+see+me&qid=1669329149&sprefix=%2Caps%2C62&sr=8-2

I would go for diagnosis - just knowing for sure can make a world of difference. I was diagnosed as an adult and it explained so much. I was nominally ‘fine’ as a small child, my issues were mainly sensory and shrugged off as being fussy. But as I got older things worsened. I got through secondary ok, but fell apart at university and my 20s were awful, I didn’t know why I couldn’t hold down jobs and my friendships disappeared. Why couldn’t I do what everyone else could? I hated myself and suffered serious depression. Diagnosis gave me the answers and my mental health is so much better without the constant self-loathing. If I had known earlier I’d love to know what my life could have been like. You don’t even have to ‘use’ the benefits a diagnosis can bring, I have no workplace adjustments etc. But knowledge is power.

Can I ask do you go through your GP to get the ball rolling with getting help or support for a diagnosis or is it through the child’s primary school?

A formal diagnosis certainly helps in the workplace once you are an adult.
DD was offered a quiet room to retreat to from the office if she was having a meltdown, her colleagues were given a briefing on how to assist autistic fellow staff, and DD was enrolled in the company’s autism support network, where she held online meetings with other autistics in branches across the country. She had access to free counselling, too.

We have just started down this pathway with our youngest, who is 8 years old. Our GP actually recommended that we go via the SENCO at school, as that way will apparently be faster than going via GP referral.

That sounds like a very good employer - I'd love to know what company it is.

We are still waiting for an official diagnosis for my 9yo dd from a paediatrician. Gone through our small steps/ local neuro behaviour team - who said she had ASD/ADD traits.

However my dd is fully aware that she thinks differently to me and her peers. She is very much like her dad, who had a late diagnosis of ASD, (he actually went through the diagnosis process for himself because he saw so much of him in her) ,school were dismissive of our concerns - just young, immature etc plus covid so that has caused the referral delay.

To her personally having a diagnosis is irrelevant at the moment, but I am hoping it will help with later school years, work and life.

I have two with ASD; one undiagnosed and one diagnosed. Not getting my eldest diagnosed iS my greatest parenting mistake. His teachers at the time talked me out of it…”he’s too high functioning, don’t label him” etc. I was a young mum. He’s now 24 and has struggled his whole life. He’s literally just managed to settle in to a job and manage to maintain a home with his girlfriend. It’s been hard. He struggled to attend school, he struggled to attend college, he struggles to attend work.

My diagnosed child has an EHCP, had a 1-1 all through mainstream primary, is at a SEN senior school, should achieve a few GCSEs, will get support at college. The benefits are obvious

My dd10 was diagnosed two years ago. The consultant handed me a leaflet and that was that. I've since asked for another appointment as I have some queries re her mental health and was told cahms don't do follow up appointments !!

My dd is suffering terribly with her mental health. Senco don't see an issue. She hates going into school. I was told an educational psychologist is now going into school once a week but doesn't feel my dd needs to be seen!

Get her diagnosed by all means but prepare yourself for a fight as support is non existent.

The world has been very geared up towards neurotypical people in many ways, so the diagnosis will help her get support in ways that benefit her. I was 9 when I was diagnosed with Dyspraxia and I'm glad my mum pushed for it because I've had years to get my head around it and see it as something that just makes me a little different. There are things I really excel at, and things I struggle with and I know how to harness what I'm good at and also find ways to cope better with the things I'm not so good at - for example, I'll never drive (not that people with Dyspraxia can't drive, just I don't think I could personally) so I've been able to settle in an area where I'm a 5 minute walk from a bus stop.
So while it's important for school, it will also help your DD as she reaches adulthood and planning a career etc.

Main benefit so far has being able to access a lot of support at High School. DD also likes there being an obvious reason for why she finds certain things difficult - previously she would get upset about being a bad/weird person.

I think the other thing to bear in mind as others have noted is that sometimes as a child moves up the school system they find it more difficult to cope.

Some high schools also have services that are only available to students with an ASD diagnosis ( I know in theory support should be based on need but there has been ring fenced groups etc in 2 high schools I’ve recently looked at). My Dc has ADHD and OCD - he’s been referred for ASD assessment but I was told wouldn’t be able to access these spaces without diagnosis.

Yes, this is exactly what happened to me (I was diagnosed with ASD and ADHD at 31). I masked well and my mum basically ran my whole life, which covered up a lot of difficulties. I was very bright so I coasted through primary school but when I went to secondary school at 12, my mum started doing less for me, I was responsible for managing myself and it started to unravel. By the time my Highers (Scottish A-Level equiv.) came around, I lost it. I couldn't comprehend anything the teachers said but I was too awkward to ask, I couldn't keep track of anything and I slipped into depression. I was self-harming, I developed issues with food (binge eating), and I left school at 17 without the grades to go to uni. My life is now "normal" by neurotypical standards but that took a long time and I've always been playing catch-up with my peers.

When I was diagnosed, the psychiatrist told me that's a fairly textbook experience of late diagnosed women - she wasn't surprised to hear any of it.

After diagnosis I felt relief but then came unexpected anger and grief. I wish I'd grown up understanding why I feel what I feel and why I do what I do. I saw a video by an autistic creator on Tiktok who said (paraphrasing) growing up autistic without knowing it is inherently traumatic because you don't know you're different, you just think you're really bad at everything. I was constantly criticised by my family, disliked by my peers, bullied, made to feel like I'm "too much" while simultaneously never being enough - maybe that would have been different if I'd had my diagnosis then.

Finally, I found the assessment process to be incredibly invasive and stressful as an adult so I'd imagine it's always best to do it in childhood to lessen the impact.

Sorry, that was long

@Swizzel thank you. I heard this but wanted to check that was the case.

Please also bear in mind its a long process, took over 2 years for my DD and I'm still awaiting the outcome.

With regards to the assessment, my DD who is 6 was taken into a room with 2 females and they chatted and played games for an hour. My dd had a lovely time and completely unaware they were actually assessing her

I'm always a bit confused about the 'what is the point in a diagnosis' question. As if it's an option to be autistic or not. As if there is any other condition in the world where you would 'choose' whether to have a medical assessment or not. As if not having an assessment will prevent autism being present. As if it's a choice.

I worked in higher education for many years as a specialist mentor for students with ASD and/or ADHD diagnoses. Having that extra social and organisational support can make a world of difference to a young person’s chances of a happy and successful time at university. The diagnosis unlocks the support. And, yes, the damage to someone’s self esteem from masking and struggling to fit the neurotypical ‘norms’ is huge; a confirmed diagnosis can make people feel much more confident about speaking up and asking for their needs to be met in education and the workplace, rather than trying to operate in systems not set up for them.

@BuryingAcorns, the company is RBS (Royal Bank of Scotland). They have been excellent with DD, and have a generally good reputation for treating staff well.
A marked contrast to TSB, where the line manager brusquely asked DD whether her autism was “cured yet”!