Why was this allowed in the 80s/90s?

[Anxiousanx]

My parents were allowed to decline my ASD diagnosis ?

At age 8 the school started pushing for meetings with them and I was having severe difficulties. They didn’t want to engage.
The following year the school had someone come in to observe me.
My parents made it clear to me I wasn’t to ‘get a label’ and needed to ‘behave normally’

2 years later at a different school with even more difficulty I was involved in meetings and had to go to what i assume was camhs or whatever it was called then ?
I saw doctors and a speech therapist and I think a psychiatrist?
My parents were given the likely diagnosis and asked did they want to proceed with that and said no as again, didn’t want me to have a label and this was allowed ?
I’ve seen some of the clinic letters in recent years and I’m really astounded and don’t understand why this was allowed ?

To be honest it's shit, you can't do that with any other diagnosis and I was shocked!

He's obviously too young to make that choice but, I just asked DS 20yo, diagnosed 7yo; he would prefer a diagnosis than not to know.

My life would have been incredibly different if I had had an understanding of how AdHD affected me.

It helps a person to understand their dynamics with others. Sorry that's very badly phrased.

Don't let your prejudices damage your children.

Diagnosis is incredibly important at any age, at the very least in terms of ones understanding of oneself. I have witnessed just how positive it can be with a number of people from age 8 to mid 40's, although it can take a couple of (painful) years to process. The journey my child has made since knowing why they had they struggles they had has been nothing short of miraculous.

I started teaching at the very start of the 1990's. The general understanding of autism then was very different. The training we received back then was all around a very "extreme" and fairly uniform idea of autism, with no understanding of the huge range of traits, and, for example, the way it presents in girls. I wonder if your parents were being given similar information and found it too much to take on board?

Now in schools, teachers are much more understanding of autism as a spectrum, from what I've observed, parents are much less anxious when seeing and discussing traits in their own children, and in pursuing a diagnosis.

In my experience of adults receiving a late diagnosis, I don't think parents need to be involved. Partners and friends can contribute from what I've been told.

I’m curious @NameThenChange, I can’t tell if you feel it was good, bad or indifferent to withhold the diagnosis from your friend’s brother?

My adult cousin is an electrician. He's a normal decent balanced individual with a great personality. He also has dyslexia. In 70s/80s he attended a 'special school' for 'the retards and the spazs'. His IQ is at least average. In his class were kids with behavioural problems, mental ill health, epilepsy, autism, polio etc. His self esteem went down until he teansferred to a mainstream school with appropriate special ed provision. When someone from the next generation was 'suspected ' of having ADHD the parents were understandably reluctant to engage. His 'label' did not help him one bit...his sports coach did!

Sadly it works both ways. There are parents describing bizarre or out of control behaviour at home but because the school have not observed it, it's very hard to even get approved for an assessment. The parent is presumed to be doing something wrong. This happens especially with autistic girls who only feel 'secure enough' to be their true self at home, sometimes even only with mum.

I already have MH diagnosis of depression on there from when I was teen !!! I absolutely don't want another one added, it would make it worse. I've started using private healthcare when I can I just don't trust the NHS and I see it a lot. Someone was left with months with a huge ovarian cyst they blamed it on mh issues she had so nothing was done and in the end had to have open surgery as it had grown so large. It's so common to be labelled as a hysterical woman the added ASD diagnosis would make things worse.

I honestly have zero prejudices. We have read books on asd together. I have offered more support that he would ever have been offered through the NHS and I know the process well as I work in mental health. I regularly see how children struggling with anxiety and depression are dismissed as soon as camhs are aware that they have an asd diagnosis. I see that once you have a diagnosis you are left to fend for yourselves. Obviously there are circumstances where it is beneficial to pursue a diagnosis, especially when your chiold needs more support in school that school are offering but we weren't encountering those particular barriers.

Then there are the restrictions a diagnosis places on emigration.

In our experience it wasn't really the external support we got, or didn't get. And it wasn't such a big deal when he was younger. The biggest difference was being able to navigate teens and now University.

@3WildOnes I'd urge you to read this thread.

Dh has mild dyslexia and less mild dyscalculia. In the 70s his parents refused to have him tested as it would have been the end for him - and to be fair at that time in his area he would have been written off. (And nobody had heard of dyscalculia then anyway).

In the late 90s I took my son to a private child psychiatrist and was told I was a fussy middle class mum and that all children are different.
Ds is autistic.
He flunked school and was miserable there, viewed as a lazy geek not living up to his potential (by teachers).

Things were very different, even 25 years ago.

I am not sure how that thread is relevant to my situation. The parent in that thread is, understandably, upset that her son was excluded from accessing support from the children's disability team and at school. It seems that the school were negligent in taking the time to understand her son and make reasonable adjustments.
My child would be so so far from reaching the thresholds for receiving help from the child disability team. He wouldn't meet any thresholds for accessing support from camhs, diagnosis or not.
Our nursery and primary school were excellent at picking up that my son has sone additional needs. We had a fantastic transition meeting with the senco before he started and they made adjustments from day 1 that enabled him to thrive in primary school. I know that we were incredibly lucky in this regard and in most cases a diagnosis and an EHCP would be needed to unlock the level of support we received. We were aware that the transition to secondary school is often a tricky time and luckily we could afford to go private. We chose a school that has lots of experience supporting children with high functioning asd and thankfully all is going well so far. My son knows that he has 'autistic traits' as defined by camhs and salt so he is able to read up on what that means and explore his feeling around what that means for him.

My post was never intending to discourage others from seeking a diagnosis. If our circumstances had been different and we had found support lacking then we would have.

@Daftasabroom I'm curious how you found a diagnosis beneficial once you got to teens and university? In my experience the main benefit of a diagnosis in the older years is being able to read up on asd and gain more insight and understanding of your own behaviours as well as feeling less alone and like you are less 'defective'.

I'm a lecturer and we have quite a lot of adjustments allowed for students with diagnoses/additional needs. For example, a student who found crowded rooms stressful could sit their exams in a room on their own/with just one or two others.

Self awareness and being able to contextualise the dynamics between himself and the world. It also unlocked a lot of support at university that would not otherwise been available.

@worstofbothworlds and you wouldn't make those adjustments for someone without a diagnosis but who needed them? I know that we have been incredibly lucky that nursery and both schools have been happy to make adjustments without.
That wouldn't really be applicable for my son currently but it is good to know and I will bear it in mind and let him know that once he gets to university that there may be avenues of support cut off from him if he doesn't have a diagnosis.

I had this issue and it can also be done by a friend or a partner who has known you a very long time.

Because back then, you would have been barred from education, jobs, even driving a car. The support systems for neurodiverse people also barely existed.

My son is currently on waiting list to be assessed, I suspect he has aspergers, its very mild whatever he has and my family have said , its just him, why are you getting him assessed. I said i suspect I also have apspergers or ADHD, and their answer is, well it didnt stop you having a successful career, and youre married with kids, so why put a label on him,they reckon if i had of known would i have achieved these things or would i have limited myself? I am still getting him assessed regardless but it did give me food for thought. I always thought i was a bit different, but my friends always say im just quirky

My son was one of the first to be diagnosed in Somerset with ADHD we got asked did we smack him punish him all by a bullying headmaster who made it clear he didn’t want him at his comprehensive Spent more time at home No school work set up doomed to fail several attempts at suicide His sisters are both successfull No support from social services and then CAMNHs stopped between 16-18

It still happens now 😢 People are scared to get support for their kids because they're scared of labels.

Still happens now. If parents refuse to engage or listen there is nothing schools can do in terms of getting a diagnosis however all schools will offer support to ensure a pupils needs are met (diagnosis or not).

This is really interesting, I would like to understand this mindset. The part about would you have done all these things or would you have limited yourself.

Is that perhaps coming from a place of self image, so they worry that if you see yourself as a person with XYZ then you'll use that as a reason just to sit back and not try?

That's really strange to me because I've always seen it as quite the opposite. Like I'm just some fuck up so I shouldn't try, whereas if I can see oh no, I'm actually not, it was my ADHD interfering with that. Well then I know what I need to work around.

This must come from perhaps some kind of, is it a Protestant work ethic thing? The idea that nobody really wants to work hard, but it's morally right to do so, so you have to make yourself. But anybody would take an excuse if they could, not to have to work because nobody wants to really. And therefore there ends up with this kind of gatekeeping around what they see as excuses vs genuine reasons.

Huh. Well that suddenly makes many things make a lot more sense.