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 ?

I'm afraid it still can to some extent. A child I know fairly definitely has some form of SEN (as do mine) and his Mum refuses to engage with CAHMS, won't take to appointments etc and so no diagnosis has happened.
Have you been diagnosed as an adult?

No because I need someone to do my childhood history and my mother refuses so I don’t think I can ?

Do you mean why were they allowed to just dismiss your likely diagnosis and not forced to pursue it?

Don't forget that understanding and support was very different and lacking back then. I grew up in the 90s and kids at school with obvious ADHD were dismissed as "brats with no discipline at home and too many E numbers in their diet".

Autism, particularly high functioning, was waved away as being pig-headed, stubborn and selfish/lacking empathy.

I think I can understand your parents thinking. It feels unfair to put a label on a child but have little to no support to go with that "label". Its different now.

You are still given the option to opt out at any stage in the assessment. I was told my oldest has autistic traits. We were then asked if we wished to carry on the assessment and in the end we decided not to. The process was causing him anxiety and I wasn't sure what the benefit of having a diagnosis would be. In my experience you don't get any support once you have got the diagnosis.

I know someone with a DS who was sent to see a child psychologist. He was a teen and he dominated the conversation and she did not feel confident enough to tell the psychologist a lot of the stuff and experiences over the years. This is only a few years ago. I am not saying it was ASD, she was a bit mysterious about it really. Something was very obviously up. Last I heard he had no job and just stayed in the house 24/7.

Hi OP,

Just a quick comment on one of your points.... I went through testing last year as a 34 year old woman and not once did they ask for my parents input. I had to give my own history. I was diagnosed ASD in October.

I hope that helps you to push forward with testing 😊

I think even now there are people who choose not to put a label on it because of fears around bias....and there is still reason to think that somebody having ASD could face discrimination because of it. My child has a label and although it unlocks help it also perhaps makes people think she will achieve less in her life because of it. (despite people like Richard Branson having the same label!)
I started work in the 90's and there were lots of things that were different....i was treating elderly people who had cancer and whose adult children would say that their parents were not allowed to be told of their cancer diagnosis as didn't want them to be "distressed"....ironic as many of these elderly people had either fought in or lived through a war so had been exposed to far more emotional challenges than their kids ever had.

I didn’t realise I always thought I needed someone to do that and my mother refuses as says she won’t be associated with ‘that kind of thing’ I think she thinks it makes her look bad ??

I struggle so much. I consider myself autistic but I don’t tell anyone I am as it’s not a formal diagnosis (although from reading the clinic letters about assessment and what I remember it was stated verbally but then never actually a formal diagnosis as my parents didn’t want it). I feel a bit lost

What was the exact diagnosis you were going to get in the 80’s/90’s though? Was it actually autism or something else? To use the ‘old terminology’, and yes I get it’s not used now, ‘high functioning autism’ didn’t exist back then, so an autism diagnosis was pretty much only given to ‘low functioning’ ASD individuals. Aspergers was not even added to the DSM until mid-90’s so with the timeframe you give what exactly was the diagnosis your parents rejected? This may be key.

@Anxiousanx message me privately if you would like to chat through the procedure/questions... the psychology testing and I'd be happy to answer any questions x

Are you able to share more about what testing involves? We’re just at the start of the process with my dd.

Happy to answer any questions.... just @ me or pm me . No probs. X

If your child needs support, you can push for it through the EHCP process, appealing if necessary. It's true that technically you don't need a diagnosis in order to get support, but it certainly can help.

You don't need a parent or anyone at all to be involved in your diagnosis. I got mine in my late 30s. I didn't want to involve my dad as he doesn't believe in autism (despite being VERY clearly autistic himself) also he wasn't around a lot in my childhood so he just wouldn't know all the small things about me, or think they were a bit unusual even if he did.

Getting an adult diagnoses was an incredibly confusing experience for me having tried to "fix" myself my whole life, struggled at school, in friendships, in career, studying, mental health and had tried EVERYTHING to try and be "normal". I felt frustrated that no one had listened to me and really heard my struggles. Same thing happened with my child. I said from toddler stage something was up, everyone said "oh all kids are like that" etc etc. Turns out not, they were eventually dx age 12. I feel very guilty about that, like I should have pushed harder. So see it still happens.

Back in the 80s/90's there were STILL far fewer provisions and allowances made for special needs pupils to be met and accommodated within mainstream schools.

Parents of your parents generation (and mine) remember when "special schools" were an educational dead end from which few would ever graduate to employment; and many would face social stigma in adult society .

If "diagnosed" pupils were moved out of the mainstream into "special schools" parents feared the child might never have access to the subjects and examination curriculum available in the mainstream. Many parents would therefore do their best to avoid labels that might limit the child's educational opportunities ( and future adult life).

Your parents were making choices in very different circumstances from education today. They did what they thought was best for you.

Aspergers

My child's school were brilliant. We had lots of support from the senco and they made adjustments to suit his specific needs without a diagnosis.

This was in the 90s but school had been raising concerns since 1989 (when I was 8)
they took me to appts but didn’t want to diagnosis . I do remember having what I assume was cognitive tests , I’m not sure and I was observed at both primary and secondary school

Your DM does not need to do childhood - surely the school letters / reports are enough.

As someone diagnosed with both ADHD and autism in my 40s, my OH was my informant. He knows more than enough about me after 13 years.

My parents are both dead, and I suspect Mum would have deemed it all fussy, attention seeking, muck raking and casting aspersions on her parenting, which is why I left seeking my diagnoses until after she died.

There is a lot of reason to get a diagnosis. I really hate all this dont label them bollocks. Several people including g my mum, teachers and a doctor said his about my DD, so never mentioned anything to her about her having SEN until I finally sat her down and explained, her response was so I'm not stupid then? It broke my heart. She is so much happier now she knows why she isn't the same as her friends.

I work in an ASD assessment team. You don't need a parent to give an early history- though this can be very helpful. I've had an adults partner/ sibling/ friend provide additional information. You can bring your clinic letters which will provide additional evidence.

I really recommend Fern Brady’s book “Strong Female Character” for a moving, open and funny account of her journey with this. It’s not super long and there’s an audiobook which she reads.

It can still happen now. My friend did it with her son and left the school to deal with the mess.

I never once mentioned 'labeling' and we have talked to our child about how they feel about asd as a possible diagnosis.