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 ?

This is still the case and even once a child has a diagnosis it can only be shared if parents consent, so there are instances where school are not told a child has a diagnosis!

It happens now, I paid for an educational psychologist who diagnosed my DD with dyslexia. They said about doing further assessments as she got very stressed about doing the test to see if she had further SEN autism/ADHD. I work in this field and I think if it's very mild it's sometimes better to not have the label as it will be stamped all over your medical records. Being female with a diagnosis makes it more likely that diagnostic over shadowing happens. Everything will be blamed on that diagnosis and you can struggle to get appropriate medical treatment.

They will often ask for a history from someone who has known you a long time, ideally a parent. But as you can imagine this is not possible for many people for a range of reasons and different approaches can be used instead. You can give them your previous documentation too. In your situation I would seek diagnosis as a way of understanding your self and as a bit of validation that you needed and deserved some support and it was wrong that your were denied it.

Oh I know I most probably have ASD , I had all the signs and my parents didn't want a diagnosis said there's nothing wrong. I'm happy I don't have the label and definitely don't want it on my medical records.

OP, I’m so sorry. My husband was the same. Parents refused to accept the label and he was kicked out of 6 different schools because he couldn’t behave normally.

He was diagnosed ASD (PDA) last year - his parents still don’t know. I filled in some info for the assessment as they wanted family member observations and he did his own forms too. They will work with what you have.

I know how you feel, I wasn't diagnosed until I was nearly 40 and only after my own dc was.

I feel sad for the younger me that struggled so much with no idea there was something causing my difficulties, the stigma of being that kid, the bullying, stays with me and I moved away because I felt embarrassed in adulthood if I bumped into someone from school or someone I knew turned out to know someone who remembered me from school and my reputation as being the bullied kid.

Even now my parents don't believe in it, I also had ADHD which my mum doubts is anything other than a label/excuse for children who won't behave.
All we can do is use the knowledge we have now to improve the lives of future generations who suffer the same.
People have suffered for many generations with no idea why they were the way they are but hopefully things can only get better from now forward.
I know that doesn't help you directly but it's some comfort to me.

It was considered a stigma, I was born in the 1960's and there were still asylums and the like.
It's only in very recent years that's it's become ok to be different, or have MH difficulties and those institutions have (thankfully) gone for all but the very worst affected.

OP my 42 year old DD has recently been assessed with ADHD and asked me about her childhood. To be honest I didn't recall anything in her behaviour that I would have felt needed neurodiverse 'label' as your mother puts it! But as an adult I do notice things that make me realise she is 'different'.

This still goes on. My daughters' friend is now pursuing an adult diagnosis after her dad made out all was OK on paperwork (lied) and refused to engage (mum had taken own life before that). So this has been only four or five years ago. It is neglect.

As an adult you don't have to have parental input, if you can afford it go private if not get a referral through your GP take the clinic letters with you as it is proof that you had difficulties as a child.

Parental input is helpful but not necessary, there are plenty of people who struggle for much of their lives and finally seek a diagnosis in their 40's, 50's or 60's.
Parents of children who may have difficulties can still refuse to engage with or seek a diagnosis for their children

I feel sad for the younger me that struggled so much with no idea there was something causing my difficulties, the stigma of being that kid, the bullying, stays with me

This was the experience of my DD too. We did our best to help with the bullying but the school was hopeless and things didn't improve until a new teacher arrived who saw DD's potential. But the effects of bullying stayed with her and she has continued to feel different to the present day. She is hoping that her recent ADHD diagnosis will lead to treatment.

I feel the same and my daughter is 35 . Even if I had noticed I doubt very much that we would have been given much help . I do find it quite upsetting that parents of earlier generations seem to be classed as bad parents for simply not having the resources at the time of raising their children .

I don't know that having a label is helpful tbh. My children have ADHD. I clearly also do but undiagnosed.

A label wouldn't help me. I had to learn to cope in a "normal" world and find stratagies to help myself

My son got extra time In his GCSEs which for ADHD isn't helpful anyway
He has a high level career now and copes well. You develop stratagies as you age.

It doesn't go away and it's always problematic. But what does a label really do ?

There may have been many reasons and stigma is an important one.

People didn't talk about it in an understanding sort of way, discrimination was rife, expressions like 'noo the full shilling', 'couple of sandwiches short of a picnic' were common place.

The possibility felt the 'label' wouldn't make a difference to your personality but could hinder you if you were forced to declare it.

Given how long the process is at the moment their will be thousands of kids who will fall out the system and never get their diagnosis.
My own child is coping and fitting in fairly well just now but I have no guarantee that will be the case in a year so said Yes keep in in the waiting list - questions were first raised when they were 3, they are now 12!

The bit that makes me most upset is my mother told the school to treat me as if it was bad behaviour and make no allowances because she thought that would make me ‘behave normally’ and I had a particularly nasty head of year at secondary who made my life hell and reminded me my mother had asked her to have ‘zero tolerance’

Op I'm 44 on a waiting list. I will be using my husband to give information instead of my mum. She's very obviously autistic and tbh is complicated to explain but I don't to give her another thing to blame herself for in my childhood.

There's a neurodiverse board here. It's a bit quiet but it could be a good place to post asking about peoples experiences etc.

I had a traumatic childhood so learned to mask, mimic others and not stand out/cause trouble. This was a subconscious thing. I adopted other peoples personalities, choices, style, education. So much 😔.

I still mask heavily now, but my husband is the only person who really knows me-me. So yeah, I'm sorry this happened to you. I only know how to help you moving forward. I've no idea what to say about why your folks did what they did. 💜

Maybe do a bit of a deep dive online. I understand aspergers is an outdated term now but you can still use it to research. I'd recommend charities and official organisations but I'm sure you know that anyway.

I wish you Luck and happiness

*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).*

My DS specialist school is exactly like this. No qualifications really, no mainstream academic curriculum, no GCSEs over grade 4 in the last 5 years. A friend's DS is a bit older and wanted to do a specific subject and was recommended this school - they actually lied to the parent and told them they did a qualification in it when they can't get a teacher.

For him (and my DS) having a diagnosis explains things but my DS has "traits of autism" but we haven't pursued a diagnosis at the moment because his screening questionnaires are borderline and we would either go onto a lengthy waiting list with no guarantee he'd get a diagnosis (and if we wanted to try again it would be the same lengthy waiting list) or we'd pay £1K or more for a private assessment that might not show anything. So we might think about it when he's a bit older so as not to waste time/money. My DS has a diagnosis of ADHD which IMO explains loads anyway and the "traits" are enough to get adjustments etc.

I hope those pursuing a diagnosis for mild Autism and ADHD do so privately and not let it be put on your NHS records.

Op possibly your mum was in denial their are still people including teachers who don't believe in autism or ADHD or dyslexia which often run together.

Why wouldn't you want it on NHS records?

@cravingmilkshake i am an adult who thinks I may have autism would you mind if I sent you a pm just interested in the provider costs process wtc?

*etc

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. I don’t think this is correct. The first “autistic” was high functioning he attended high school. The remarkable (as in what made it interesting to Drs and the public) thing about autism was ALWAYS that HFA’s existed. It opened the doors for a greater understanding of the person wishing the disability.

Of course you have always been able to refuse dx, Drs are not rubber stampers and you go to them or take your child to them if your own free will. You don’t have to take their advice or follow their treatment plan and this is a good thing.

It still happens. 10 years ago after assesment referrals and time spent under occupational therapy my then primary school age child was offered a possible ADHD diagnosis by the paedatrician, along with confirmation that he would require the use of a laptop for exams due to handwriting issues. Along with may other suggestions to aid learning, wobble cusions etc when younger. I regretably didn't want them to be stigmatised as I was concerend what an ADHD label would mean for them and had concerns about a label being an excuse not to achieve things, and potential employers views on ADHD int he future may hold them back. I deeply regret that decison now, however they always had learning help in place through school and has exam access arrangemnts due to difficulties and traits and has to date achieved well, with support. Somtimes as parents we make mistakes but think we are making the best decisins at the time.
However saying all of that (also as an undiagnosed individual who very clealy has many traits) whatever your label or not label, we are are individulas with different quirks and if reasonably high fuctioning, you learn startegies to cope and move forward in life.

@Anxiousanx Aspergers okay, so the diagnosis you were going to receive must have been after 1994 as it literally could not have been a diagnosis before then (can’t formally diagnose if not in DSM). The fact the school flagged something in the 80’s is moot as nothing could have come if this prior to 94 so your parents were not at fault at all prior to this.

It seems you are looking at a diagnosis through today’s lens. In the time period you refer, schools were not set up to support this, it took quite some time to roll out so you are really expecting your parents to agree to what is a new diagnosis not known/understood at that time that would have received zero support at a school as it took them several years to get their heads around it and associated required supports. That’s quite unreasonable.

Before the overhaul of the DSM at this time and then the years it took for people/schools to ‘implement’, people who would have subsequently been diagnosed with Asperger’s were often shifted off to the area Special School with odd labels that often included forms of retardation (not my term, but the term in use at time), simply because there was nothing that ‘fitted’ before then. This created stigma. It wasn’t necessarily an individuals’ parents stigma but societal stigma at that point. The Special School in my area in this era was actually called ‘xxx School for the Retarded’. This is where people like yourself would likely have gone in this era with a label before people got their heads around what the DSM revisions really meant in practice. Not sure how guilty your parents are for being cautious in this time period.