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....my son, 13, is clearly neuroduverse, major sensory issues, meltdowns (usually in the evening after a day at school masking), always interrupts. He has visual stress, is exceptionally hyperactive (luckily he's sporty), but is in the bottom sets at school as just can't focus long enough. He holds grudges against anyone who has ever wronged him, has such a clear cut opinion if what he considers right or wrong.

I did start to go down the private diagnosis route, but the school's evidence just wasn't strong enough and I gave up. To be fair the SENCO did say "we just deal with the child we're dealt with on the day" so will try and support him if he's having trouble. But is a big school with children with bigger issues, so mostly his issues at school are largely ignored unless he really disrupts the class. But I know it means their academic expectations for him are much lower than they should be. He's as quick as anything, visual/auditory learner, but whiteboards and books don't work for him.

He's also seen pyscologists and counsellers over the years and I watch on as he fools them with his alter ego, the butter wouldn't melt in his mouth approach. None of them suggested we get an ASD diagnosis

His dad also is neuroduverse, as someone neurological, I eventually realised I could not live happily with his different approach to life. When I suggested to his dad he may have ASD, he flew off the handle, was highly insulted and that was the nail in the coffin for our marriage. I think if he'd accepted it we may have found ways to work round his quirks, instead he said he couldn't live with someone who thought he was "mental". No matter how much I tried to explain it was just because we thought on different plains, he was not willing to.listen. Subsequently his dad has never been supportive of my getting him diagnosed.

I am exhausted most of the time, relieved when my son behaves 'nornally', but always on edge expecting a meltdown. The other day he had a complete meltdown because his den, where he watches TV was too messy and he didn't know where to start with tidying it, so I had to help him methodically tidy it. His dad can calm him down as they have a similar approach to life, but I have my son 90% of the time, so his behaviour is down to me to manage.

....that just felt very good to get off my chest...a bit of therapy in my chaotic world with my son!

Take the paperwork to a doctor. You would get a diagnosis no problem.

That would massively upset me as well. My parents told the school to challenge me with harder work and less flexibility for my ‘quirks’ so I remember things getting really bleak - I would have been 6 in 1989, so only two years behind you.

I’ve got the diagnosis now - you can fill in your own childhood examples and have someone provide evidence of your behaviour now (so they don’t have to have known you as a child). My other half did mine for me on that basis. I, too, went to my mum and some of the things she said…well, let’s just say, I didn’t think it worth involving her further in the process.

Good luck - it really will change your life x

I work in adult mental health, we send out patient questionnaires one is the CAST questionnaire for parents/carer to fill out if possible, but it's not a defining questionnaire so parents don't have to be involved as many older adults may not have communication with their said parents/carers still or they may not be around etc

A friend of mine is emoyed by our local University to support students with SEN. Sometimes this means she scribes for them but on several occasions she has worked as a companion for students with asd, accompanying them to lectures, the library, shops, social events etc for the first term to provide support whilst they accustom themselves to the campus and University living.

Hi, you can be diagnosed without a parents interview as an adult especially given the amount of evidence you seem to have from your childhood that can be referred to.

Just wanted to add my experience.
At 2 I expressed concern my daughter had extreme reaction to noise, covering ears and cowering. I was somewhat poo pooed, and told she was just shy.
I decided not to push further, still not sure if I regret this, and she is unsure, but we always had the feeling she was on the spectrum, and I realised later we had accommodated for this by sometimes adapting what we did as we just didn't want her upset.
At 15/16 she decided to seek diagnosis so she 'had a reason and wasn't just weird'.
3 years later she was assessed, I also answered questions, and during lockdown in her university halls she got the diagnosis over a video call.
She said it was a slight anticlimax, and just thought to herself 'I was right'.
Has anything changed since diagnosis? Possibly, she obviously posted on social media her diagnosis, and was astounded by the responses of 'welcome' making her feel more normal, she is quite proud to be who she is, although sometimes gets frustrated with her mind. I don't know if it's just being at university, or that she understands herself better, but she definitely has a greater confidence and is more comfortable with who she is

I work for CAMHS. We refer our YP to another agency for ASD assessments. Parents can refuse the assessment but once the child reaches 16/17 they have to give their consent too. From about 17 years old if parents refused and was having the difficulties you describe an assessment could be done without parents, they would look for alternative evidence such as information from school or in your case the letters you have from the time you were 8. As an adult your parents will not have to give a history. You will be able to tell them yourself of your struggles

Sadly all of that still happens now.

Following

This is a book written by a woman diagnosed as autistic as a very capable adult teacher and skilled training provider. It’s easy to read and explores different perspectives about autism and diagnosis from a variety of autistic people. It’s well worth reading.
Here’s a link to the book

@Flymum70 I hear you. That's the best I can offer I'm afraid but sometimes it is helpful for you to know that someone understands. ❤

In the borough I work in, you need parental consent to even raise a child in question with the Ed Psych, let alone for them to be observed or worked with. It makes pursuing any sort of diagnosis impossible if the parents decline.

My mum still still thinks it’s a terrible thing for a child to be given a ‘label’. It was the thinking back then I’m afraid. Pull yourself together and act normal

You don't need a parent to do your childhood history. My husband did my informant form and he's only known me since I was 20. I filled in as much as I could about my own childhood. Got a diagnosis a few weeks ago at the age of 35.

My comment was in response to the OPs about not being able to get a diagnosis as an adult...

Parents still have to give permission for assessments.

Have a friend at the moment who refuses to "give his son a label".. he is clearly in need of some sensory integration therapy and some social skills courses and a label would really help with getting that for this sweet child who is really struggling .. it is so much easier when kids are given therapy when they are younger too instead of lletting them struggle for years x

he is clearly in need of some sensory integration therapy and some social skills courses and a label would really help with getting that how? Diagnosis isn’t linked to support in that way here (SW)

i had a similar problem I went to my doctor and they referred me to the ADHD service after asking me a series of questions, before my appointment I was messaged links to fill in asking about my life now as a child and school about my work life eck I answered all questions as best as I could as I have no contact with my dad and mum is deceased, I then had my appointment where they went into the questions asked in a bit more detail and was diagnosed with ADHD I am 40 now, see if you can go down this route and good luck

Hi I have heard of some children who have been diagnosed suing the diagnoser for "ruining their lives with the diagnosis " maybe your parents (incorrectly) thought this would adversely affect you instead of help you get support and know yourself better. How do you feel about them refusing the diagnosis?

@Osiansmummy1 where have you heard this? Which country?

I encounter these attitudes still from my parents. I and my siblings struggled through school with no diagnoses or support. No self-understanding. Trashed self-esteem. One sibling (straight A student all through school, first at University) because an alcoholic. Then emigrated to the other side of the world and has no contact with family. I ended up suicidal. Also straight A student, same stuff, good career... but, the damage done is huge. No support with social relationships, trashed self-esteem, bullying. We were so vulnerable and nobody protected us. I waited until 30 to marry, someone I'd known and lived with long term. But they turned out to be abusive. The damage is huge, of living life undiagnosed. I know many autistic adults diagnosed as adults and without exception diagnosis has been positive for every single one.

This article resonates with many of the adult autistic women I know:

www.bbc.co.uk/news/uk-64953941

My parents still want to pretend autism isn't real, it doesn't exist, call it a "label". It's not a "label" any more than any other medical diagnosis. It's a statement of reality. Denying it invalidates the experiences of autistic people and makes us suffer in silence.

The NHS put my young children on the pathway but told me that they'd be waiting until pretty much the end of primary to have the assessment. Meaning their learning and ability to enjoy school and engage and be supported in early education would be trashed. And then no surprise that going to secondary they'd disengage entirely like I did. My attendance during GCSE years was 12%. Why would I want to repeat this for them? Yes I still got A*s because I'm academically able, but that doesn't mean my life wasn't a living hell.

So I've funded private diagnosis for them both, and they have got that now from early primary school. It's all very well saying that support in schools is meant to be needs based and great that some schools adhere to that but I was fobbed off and blamed and ignored until they had the diagnosis. Now it's a different story.

And OP - yes you can get a diagnosis even without anybody to provide history. You have some documents and information. Many peoole end up going through diagnosis without parents to input either because they won't or because they are dead, given so many of us were missed in childhood.

I hope far fewer parents of this generation choose to deny their children diagnosis because the damage that does can be immense.

Hi cahms told me that had happened here north wales.. Op you dont need parents involvement at all.