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 can only share my experience, I’m not here to judge. You’ll do what you feel is best.
My DS is getting assessed next week. He’s 15 and I feel terrible that I’ve let him get to that age before he’ll be (most certainly) diagnosed.
I never suspected ASC, but knew there was something that I wasn’t picking up on. DS has always struggled socially and in hindsight I have been an idiot not to know sooner. Primary school didn’t flag, and Covid hit as soon as he got to high school pretty much. It was only then, when he began with mental health issues of anxiety and low mood. He was referred to CAMHS when he became suicidal.
CAMHS have helped hugely with this and they asked us to consider ASC.
18 months down the line, he is now on anti depressants which have helped the anxiety and low mood but his autistic traits are very apparent. High school and puberty have absolutely had an impact. They describe him as high functioning. He still however, needs a lot of support. Exit passes for school etc.
His high school tried to put me off going for a diagnosis, they actually asked “why I’d want to give him that label”!! They have been less than supportive.
I’ll be glad to have the diagnosis, so we can help him as much as we can. It’s not what I’d hoped for, I see him struggling on a daily basis. It’s definitely getting worse and not better.
With the wait time for assessment (CAMHS) being on average 2.5 years, it may be worth getting the ball rolling on this and seeing how they get on. I wish I’d have woken up to it earlier, my DS may not have had the issues with his anxiety and now severe depression that he has if I had have had support for him sooner. In my case though, I wasn’t thinking along the lines of ASC until very recently, now when I have done some research, it seems so obvious and I’m left feeling that I’ve failed him.

My eldest two are text book adhd. Maybe one higher on spectrum also. Smallest I notice autistic traits. We have autism and adhd in the family. All three are happy. Healthy. Youngest doing well in pre school and oldest in their schools. So why bother getting assessed? You get assessed if they need support. Mine have had some issues but we have managed and they have sorted ways to deal on their own. I don’t believe having an assessment will help mine at all.

All three are happy. Healthy. Youngest doing well in pre school and oldest in their schools. So why bother getting assessed? You get assessed if they need support.

I'm thinking back to when my now 12 year old was in pre school. Doing well. Happy. Healthy. She is now an absolute wreck who barely leaves the house and no longer goes to school. I can't imagine how the past few years would have played out without the diagnosis being in place as soon as we were able to proceed with the assessment.

I think back over my own life experiences and having a firm diagnosis and understanding of myself would have saved me from so much hurt, trauma; rape... Being able to advocate for myself because I understand why I'm different regather than hiding away thinking I am weird has been life changing.

Waiting until support is needed is leaving it far too late.

I learnt the hard way with my DD not to wait until they are in urgent need of support to really push for it. It took us 18 months to reverse the damage.

@Chipsahoy, OP and all the others who say your dc are doing ok in school, are happy and your dealing with it yourself so don't need a diagnosis, please consider my post.

I'm not claiming to know your dc or your family but remember autism is a communication disability. You dc may be struggling internally but be unable to fully and accurately communicate their needs and their pain. If you had asked me as a child if I was happy I'd have said yes, my parents thought I was doing OK, a bit quirky but in general a happy girl. Inside I was absolutely dying, I was scared, I felt like an alien, so different, life was utterly overwhelming. I couldn't find the words or the way to communication this despite trying. I'm an articulate person but I didn't have the knowledge or ability to do so. No one would know. It was hell on earth. I wanted to die. I tried in secret to pluck up the courage to end my life multiple times from age 11. My parents still to this day don't know this. You may not know how much your dc are really struggling. My diagnosis has been life changing.
When I heard those words as an adult I cried through grief and sadness for my childhood self and I actually feel angry that my parents didn't do something. I find them selfish and I don't think I can ever forgive them.
You might think your dc are OK. They may well be, but they may also be so trapped inside themselves they don't know how the fuck to get out. Do not let them down.

I fought and fought for my dc diagnosis because its who they are, they are not labeled as odd or quirky and because it means we know what support might help. I will do everything in my power to protect their mental health and that is the right way.

listen to actual autistic people who are able to verbally tell you what its like, not one of them will tell you they are not glad of their diagnosis in the end.

Also stands for adhd which I have too.

listen to actual autistic people who are able to verbally tell you what its like, not one of them will tell you they are not glad of their diagnosis in the end.
I was not glad of my diagnosis as I was years away from being ready to accept it. My mental health dropped off a cliff following my diagnosis and my teenage years are a blur. I wish I had had the positive experience many others have mentioned of an adult diagnosis.

I stuck my head in the sand for twelve years delaying an ASD diagnosis. I was negligent and should have known better as my older two kids are autistic, my third was social, very popular, managing well with a few flags that I tried to manage myself . But I'm not a professional! When secondary school and puberty came into play his differences were highlighted.
Yes he was sociable but immature and inappropriate at times, his moodiness stemmed from masking all day at school, his school jumper irritates him, the noise of hundreds of students as they move around the school overwhelm him. The smells in the air, I could go on and on.
He got his diagnosis over the summer and it was such a relief to him. He finally understands why he doesn't always fit in and that it's okay. He doesn't need to mask as much anymore. (masking is very detrimental to their mental health). We could get accommodations made for him eg to leave his jumper off whilst in school, he can take sensory and movement breaks when he needs to. His SNA(TA in UK) will help any way they can.
He has a diagnosis, not a label.
ASD is not some shameful or embarrassing disorder, it's a different way of thinking.

I got my autsim diagnosis three months ago and I absolutely welcome it, but being undiagnosed for 47 years means that I'm unfortunately dropping off that cliff at the moment and it's awful. I can only imagine how different things could have been had my difficulties been recognised sooner.

I also have a Ds that was diagnosed at 15 and 3 years later he needs specialist education.

A child may look like they are coping, you may not want what you call a 'label' ( it is not). But an autistic child grows up to be an autistic adult and doing that without any support or understanding of why things can be so confusing and difficult, in both mine and Ds's experience is just awful and very very damaging.

But an autistic child grows up to be an autistic adult and doing that without any support or understanding of why things can be so confusing and difficult, in both mine and Ds's experience is just awful and very very damaging

I see what you are saying but you can still discuss with your child. I spoke to my child about it first when they were 12. They said it made sense to them when they looked into it but were largely disinterested. We've discussed it multiple time over the years, they basically accept that they are autistic but don't want a diagnosis.

That said I realise that my DC had a very specific set of circumstances that meant we were incredibly lucky.

Please read my post from earlier in the thread. If your kids are "text book" ADHD life will get hard at some point, be it secondary school, college or beyond.
Medication can be absolutely life changing.

Take it from someone with lived experience, denying them a diagnosis therefore an understanding of self, and support, is not helping them. At all.

@Lovelyricepudding getting a diagnosis of autism doesn't mean that you are forced to become part of the Autistic Community online!
I have huge issues with the community. There are always bun fights on MN posts about autism when someone who is active in that demands that they are seen to be right as theirs is the authentic experience. Ands then there's the whole trans issue which is another can of worms.

I wish I'd been able to discuss it like this but been able to pursue a diagnosis if or when I was ready to.

We had this dilemma with DS. Although showing a number of ASD traits, he was doing well in primary school, with great reports and lots of friends. We were keen not to have him 'labelled' for the sake of it. However, a friend of ours with an older ASD child strongly recommended we start the process of obtaining a diagnosis and I'm so glad he persuaded us!

Our DS had always been a model pupil in school, but came home exhausted each day and had increasingly violent meltdowns over the slightest thing. Looking back, we've now realised that the effort he was making to 'mask' his ASD was taking all his strength. Once we finally got a diagnosis (about 18 months) and he got the support and accommodations at school that he needed, he's been so much happier and more relaxed. It really has been worth every single form and assessment and therapy session and chase-up calls.

Genuine question to those who don't want their child 'labelled' because they are doing well in school

What do you think would happen to your child if they were labelled (diagnosed)?

He got his diagnosis over the summer and it was such a relief to him. He finally understands why he doesn't always fit in and that it's okay. He doesn't need to mask as much anymore. (masking is very detrimental to their mental health). We could get accommodations made for him eg to leave his jumper off whilst in school, he can take sensory and movement breaks when he needs to. His SNA(TA in UK) will help any way they can

He has a diagnosis, not a label

ASD is not some shameful or embarrassing disorder, it's a different way of thinking

This.

Those of you with primary aged children who say that they suspect their child has ASD but they are not willing to get a diagnosis - please know this.

Its extremely likely that you child knows that they are different. If you are not willing to pursue help or an explanation for them, please know this:

There are many adults and adult led groups online who will be queuing up to give your child an alternative explanation for why they feel that they don’t fit it, which is that you “ assigned them the wrong gender”, they are trapped in the wrong body and the answer is to get powerful drugs and surgery to fix their faulty body.

They don’t need to talk to you about it - there are plenty adults online who will help them bypass normal safeguarding protocols.

Instead of being weird and geeky, they will hold out the prospect of being cool and exciting.

Instead of feeling unimportant and even invisible, they can be important and get special rights and privileges over other pupils .

Instead of being powerless they will be powerful. They get to tell the teachers and other adults what to say and do.

They can even punish the children who have ignored or bullied them by making allegations against them and they will be believed without question.

Instead of being left out and lonely, they will find “ their tribe “ and groups who will welcome then with open arms. They will be the most famous and well known pupil in their school. They will get praise or maybe even awards for being brave and authentic.

How seductive is that? Sign me up now please. So much better than tedious old fashioned autism 🥱🥱🥱

@MinervaTerrathorn

I'm so sorry your experience was so difficult, thank you for your post that is exactly what I want my DC to feel like.

making them feel that there is something “wrong” with them isn’t always a positive thing.

Why would being autistic imply there is something "wrong" with someone?

Shocking that somebody who says they work in a school has such ideas.

My reasons for that is because he’s high functioning and extremely mild, has amazing school support and I don’t feel he needs additional input or a label as for him it would change nothing

There is no such thing as "mild autism".

Being high functioning doesn't prevent that damage to mental health that constant masking does, particularly when you don't understand why you are having to do it.

A medical diagnosis is not a label.

And it's funny how not a single person I know who has a diagnosis believes it was detrimental to them. In fact, quite the opposite.

I think you've made the right decision to go with what your child wants to do. My younger sibling realised they were autistic in their teens but has never pursued diagnosis. Maybe my diagnosis meant that they knew sooner than they would have otherwise, then that would mean some good came of it.

There is no such thing as "mild autism".

It's "mild" in the sense that day-to-day functioning is effected less than for others with the same diagnosis. Think successful business person, married with children vs someone unable to talk, feed, toilet themselves.

I am that person, taught themselves to read at age 2, offered a private school scholarship at age 4 (not taken up). Miles ahead throughout primary school, passed 11+ with flying colours etc etc etc
But while my parents always knew there was something different about me (they'd never have said wrong with me even though I would), they never tried to get me a dx.
I struggled all the way through High school, was labeled "naughty" and "disruptive". Always knew I was different, was desperate to fit in, would have loved to be able to walk in to a full classroom and make friends like other people can.
The struggling has carried on throughout adulthood, looking back now I can see how incredibly vulnerable I was/am and how this led to me being in an abusive relationship. Pretty easy to isolate someone who doesn't do socialing anyway.
I finally got my ASD and ADHD dx 5 years ago at age 45. Yes I still have the same issues, but now I don't fight them.

It’s worrying how many people think waiting until things start going wrong to begin the diagnosis process is a good idea!

SteveHarringtonsChestHair

My dc were those children and my Dd not only masked her autism but stark learning difficulties to the extent she got into grammar school. It has been catastrophic I will never forgive her schools for being so spectacularly shite and having a nothing to see here attitude because she made their data look good. She is halfway through an EHCP and now has so many services supporting her.

There is no such thing as mild autism.Nobody knows anything about anybody’s day to day functioning. My daughter looked great but was dying inside and has been hospitalised multiple times.

There is no such thing as mild autism. People have different presentations and different needs, but that doesn’t mean they are less or mild. “Persistent difficulties” that “limit and impair everyday functioning” aren’t mild. If their difficulties were mild they wouldn’t get a diagnosis.

Out of interest, how would the people saying there’s no such thing as mild autism distinguish between my cousin who is non-verbal, wears nappies and needs round the clock care, and my colleague diagnosed with Asperger’s as a teen who is married with kids having got a starred first at Cambridge?

Is “low support needs” acceptable?