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?

You could speak to the GP, and also ask for a referral to occupational health. Other possibilities to prove the impairment(s) rather than the diagnosis could include things like email exchanges or GP/other HCP notes (e.g. from appointments about other things or your MH difficulties - for example DS1’s recent immunology and allergy clinic letter comments on his communication and interaction difficulties) or assessment reports as part of other things (e.g. those who apply for a blue badge and are assessed by an OT as part of the process could use that assessment report). It’s difficult to know what evidence would be available to you without knowing a lot more about you and your circumstances.

@coodawoodashooda you said this in an earlier post;

"I think I can get him all of this professional understanding without the label."

How do you think you could?

I also asked you why you think your DC has ASD but you haven't replied. What are the signs / symptoms / behaviours?

I have adhd, diagnosed as an adult. I don't blame my parents for not getting me diagnosed as a child. I don't think they realised, and as I'm also pretty sure that my mum has undiagnosed adhd herself, she had normalised so many of the behaviors that should have alerted her to it.

I think for a parent who has identified that some kind of neurodiversity is a possibility, it's negligent not to pursue a diagnosis. It's cruel to deny them that opportunity to understand why they are how they are and to access support when they need it. I honestly don't understand why any parent would do that to their own child, unless they are so prejudiced against neurodiversity that they would consider it somehow something to be ashamed of.

Ultimately, it's your child, OP, and you get to decide how to handle this decision. What you don't get to decide is how your child will evaluate that decision when they are old enough to do so. They may find it difficult to forgive.

It depends if they can manage the education system without a diagnosis. If they have an area they significantly struggle in then it would be kinder to go through assessment and get them the support they need.

@coodawoodashooda

We attended National Autistic Society parenting courses. It's more of a slightly different way of thinking and parenting.Tips include (and there are hundreds of these):

Don't worry about eye contact, sensory processing issues mean they may not be able to look at you and listen to what your saying at the same time.

Buy the same clothes all the time. Is it really a big deal if he only ever wears white socks? We bought school uniforms a year early and left them in his wardrobe to get used to them. Think Geoff Goldblum in the Fly.

The school let him sit in headmasters office and read an encyclopedia if he was having a playtime meltdown. Did you know slugs have shells?

Allowing and helping him to stim in non conspicuous ways (he spins a pen round his fingers, quite impressive to watch TBH!).

He had a huge collection of soft toys that he took to bed, it got to the stage where the collection got bigger and so did he. There wasn't enough room for all of them so we had to devise a rota!

We got lots of help transitioning from primary to secondary to college to uni.

The big big thing is "choose your battles". Is not being able to dispose of something you have given a name (stoney the stone) a big deal? Not really compared to learning how to cross a road. (This goes for all kids, but doubly for ASC).

The tough times have been tough but the bits in-between have been incredible. The GCSE English grade 5 meant more than all his 9s put together.

My cousin won't with her DS who has just started Y7. She's convinced he has it, as are most of the family but I think she's scared of the small chance not getting a diagnosis as it would reflect badly on his previous behaviour. He attended a small village school up to Y6 and caused significant disruption and damage to classrooms. I agree with others - if your child needs any kind of additional help that a diagnosis would bring then you're harming them by not getting it. Even if it's just extra time in exams or pastoral support.

So agreement here at least that the stress and mental, financial and practical burdens involved in trying to get basic legal minimum adherence to our disabled children rights is pushing families into mental health crises.

When we think about the 'success' of our nation, lots to reflect on here in terms of how it's most vulnerable children and their families are treated.

I rarely see my GP, I was signed off for stress/depression for a couple of weeks over the phone two years ago, and a referral for anorexia then a assessment (no treatment) by ED services the year before that. MH stuff when I was regularly seeing anyone was 18+ years ago.

I noticed in the social group that males and females present very different. The males are usually more obvious, and more likely to not realise they're hassling others in their approach. Many of the females seem to realise they don't act normal and become nervous in social situations, so sometimes just seem shy.
You would hardly guess many of the females are ASD until you get to know them, as many females talk, dress and act 'normal'. However, once you get to know them and find out what has happened to them, you find out how much they have been taken advantage of. I would say most of the females have been sexually assaulted from not seeing the dangers or intentions of dangerous men, or even been taken advantage of by bossy female friends who realise they're desperate for a friend. Even though you would never guess they're on the spectrum, they're still at risk.

I'm curious why you're so much more keen on them attending mainstream schools? Most people on the autism spectrum had an awful time in school from being 'different'. It takes a lot of effort to fake social skills and trying to be cool, and that effort would be put to better use at concentrating on the education.
I think you're probably more likely to become an autistic genius like Elon Musk, Guy Martin etc, if you can avoid mainstream social pressures and concentrate on your special interests.
If I could have my time again, providing you could take the same exams as mainstream schools, I wouldn't have chosen a mainstream school.
Maybe others would though, but that's my personal opinion.

You could make an appointment to discuss the matter. When you were signed off did you discuss/mention any of the difficulties causing the stress/depression and, as they often are, were they related in any way to the impairments stemming from autism? Was your autism diagnosis &/or the impairments mentioned at all in the AN referral/assessment? Often they are due to the higher incidence of AN in the autistic population. You could ask work for a OH referral.

@LilyPAnderson In DS’s case it’s because MS is best for him. I’m not just saying that, it is the opinion of every professional involved. He is happy there, thriving, he doesn’t have to fake social skills or try to be cool - DS would be aghast at either of the last 2. I’m not for mainstream at all costs - my other DS with an EHCP doesn’t attend MS because it isn’t best for him, but it is for the DS attending MS.

With ds i wasn’t dead set on mainstream. I was dead set on the best setting to meet his needs. The specialist provisions locally couldn’t have met his specific needs in the same way his mainstream school (with full 1-1 and a good support package do). This was the only school that was a feesible option for him. It that was to fail I would be pushing for an EOTAS package for him.

that’s not to say the other schools I visited weren’t fantastic they just weren’t right for him.

Because every school specialist and mainstream are vastly different.

My DD has a wonderful year group, she doesn't have the ability to fake social skills so doesn't really feel that pressure as her awareness isn't there to even notice. Her class are so accepting towards her and she's fully embraced for who she is.

Her specialist options were:

Behavioural school where quite a lot happen to have autism but it isn't an autism school. She would have been not only the only girl in her class but the only other girls were 4 years above her. The behaviour in the school is understandably challenging and she didn't manage to cope with one child in her year (who is now at that school) let alone her whole class finding things difficult. She isn't a behavioural child.

Moderate Learning disabilities school, she has a specific learning difficulty but is very capable academically. Her class would be 3-4 years behind her.

The autism twin schools are predominantly non-verbal. She wouldn't have peers similar to her. Also non-academic.

She will move to specialist for secondary but there are more options available. For now, where she is is absolutely the best thing for her.

I noticed that I have contradicted myself, but trying to find your place and fit into mainstream society can be confusing.

One the one hand I feel that if I was diagnosed as a child there would have been more excuses for me to not act 'normal'. I don't think it would have helped me to be diagnosed early and had excuses made for bad behaviour.
Having discipline that other children have when growing up has done me good. I feel autistic children need social skills drummed into them more than other children as it doesn't come natural, so they don't grow up like a rude Dr Martin character.

On the other hand I feel the pressures of being in mainstream school have damaged me. I was bullied by not only other pupils but also teachers, for things that weren't my fault.
I loved learning but didn't do well in school because of the social pressures, and gained much better grades by retaking my exams in adult education evening classes.

One thing I feel strongly about that isn't talked about, is that we find it hard to work out what others are thinking or feeling, and would find it helpful if others actually explained to us what they're feeling about us or our behaviour, to make us less confused. I often found it easier to just assume some people don't have feelings.

Because there aren't alternatives. "Providing you could take the same exams as mainstream" rules out pretty much all special schools within a 2 hour drive and the council is somewhat reluctant to pay over £100,000 for a specialist residential.

I feel autistic children need social skills drummed into them more than other children as it doesn't come natural, so they don't grow up like a rude Dr Martin character.

but isn’t that simply saying you feel autistic people should be trained to mask who they really are to fit in. Is that really what is best for the individual?

My son (age 10) would definitely meet criteria for ADHD, and probably for ASC if I was to get him assessed. He stims too (arm flaps, facial contortions), which would add to the likelihood of a diagnosis. However, I don't think in his case that labels are helpful. We manage his ADHD type symptoms through sport, and are helping him develop focus and attention. In terms of ASC, we are teaching him social skills etc.. Great sometimes in his own world, but that's just him. If he did get an ASC diagnosis, it would b v mild.

He's actually a lovely boy. He has loads of friends, quite smart, excelling in sport. I would not want any limits placed.on him and personally think ADHD and ASC are way way over diagnosed nowadays. Particularly ADHD.

Masking is detrimental to wellbeing.

Having a diagnosis doesn’t have mean excuses are made for bad behaviour, there’s also a difference between wilful bad behaviour and behaviour that is explained by a disability. My DS with ASD in MS is actually my best behaved DC. He is a people pleaser, and even the thought of breaking a rule causes him anxiety, which comes with it’s own set of problems.

Both my DSs with EHCPs have SALT, OT, emotional literacy support in their EHCPs which covers emotions/feelings etc.

>>but isn’t that simply saying you feel autistic people should be trained to mask who they really are to fit in. Is that really what is best for the individual?<<

Well that's just me, but I'm grateful I was disciplined and taught what's socially acceptable in society. If I was diagnosed with ASD early and had excuses made for what others see as bad behaviour, then I feel as if I would be less accepted in society and have had less opportunities.
As it is now, I feel confident that I can pretty much act in an acceptable way in any area of society, and that's a skill I had to learn.
An example is that I know that if in a group conversation, I need to give others a chance to air their views which are as important as mine, and I need to acknowledge people and be polite to them, as they have feelings too.

@HelloDoggy no; if your son had a diagnosis it would not be “v.mild” as they don’t diagnosis it as mild or severe 🙄 honestly, some people. And they wonder why some children end up fucked up.

“He’s actually a lovely boy”

do you realise how insulting things like that are (and let’s not go onto your well educated over diagnosis comments) being autistic doesn’t mean someone isn’t lovely you know!

@Sirzy agree. As though no child with ASD/ADHD could possibly be lovely, have friends or enjoy sport.

i can’t work out if @HelloDoggy is goady or just really thick. Maybe both, the 2 often go hand in hand. God help her son!

The stress/depression was due to workplace bullying and disappeared when I took a pay cut to move departments but my ability to cope with the bullying would have been affected by autism. I did not mention the diagnosis then or with the AN referral/assessment. I have had anxiety around health professionals since my diagnosis and I have a tendency to only give them the bare minimum of information.

Would OH require any evidence or would they take my word for it?