High functioning asd and no interest in a diagnosis.

[coodawoodashooda]

Has this worked out for anyone? Does anyone wish that this is what they opted for?

@TableFlowerss

Me too.

Our son is clearly ASD. He had classic features of Autism (stimming, etc) but is also very intelligent. There is absolutely no doubt. He’s been seen by an Ed Psych and a paediatrician. We went to our GP and we had a discussion about what we hoped to gain from a diagnosis. We looked at the NICE guidelines around treatments. We already knew we wouldn’t consent to him being drugged so he was more manageable, so there was very little that diagnosis offered him. We were told it would mainly be us as parents who were offered training in how to cope. Given our work experience we felt we could probably work that out ourselves. The GP and CAMHS cancelled the assessment and that was that.

It isn’t something that can be cured. There are no evidence based treatments that significantly improved the ASD child’s experience of the neurotypical world. There is no additional support where the child is high functioning so the label was purely that - a label. It served no other function at all so we didn’t bother pursuing it.

We have friends who did carry on and their experiences seem to have been fairly horrific, so we’re glad we didn’t go that route

In what way was your friends experience horrific?

Wow.

First of all, ASD isn't treated with drugs. ADHD is in some cases. The shit that comes with ASD like anxiety and depression might be treated with drugs but there is no pill for ASD.

Secondly, no one is drugged to make them more manageable for others. If a child with ADHD is medicated then the meds are to make the symptoms more manageable FOR THEM.

If your child was in pain would you refuse them painkillers.

I couldn't deny my child something that could improve their life.

@Fluffypastelslippers

Offended is the wrong word. You have taken my life experiences and turned them into something they absolutely are not. I'm disgusted more then anything.

I'm stunned at me telling you I was raped because I did not understand myself, my situation or how to keep safe and you responding 'but it's empowering to choose to be diagnosed as an adult' as if it's some sort of hippie commune I joined.

And yes, I said I was leaving. But that's the nature of autism. I need to constantly defend myself because I have been misunderstood my entire life

I was making reference to my situation.

OP I’m not sure what you want to achieve by not getting your child diagnosed. I’m presuming it IS your child since you mention school.

You don’t have to disclose a diagnosis for most jobs. Very few require it (like the Army). So what’s the problem?

You seem to somehow fear your child being ‘labelled’. You can’t change whom they are. A diagnosis will allow access to supportive resources.

I was making reference to my situation.

You were being downright rude, dismissive and ableist.

@Fluffypastelslippers

I was making reference to my situation.

You were being downright rude, dismissive and ableist.

Thats your opinion. I said i was sorry. Im trying to work out my situation. My childs learned behaviour from his nasty dad and possible learning differences.

Thats your opinion. I said i was sorry. Im trying to work out my situation. My childs learned behaviour from his nasty dad and possible learning differences.

You didn't say sorry though. You said sorry if I was offended. I'm not.

You said it would be more 'empowering' to make the choice to be diagnosed as an adult then tried to backtrack and say you were talking about your own situation.

There is nothing remotely empowering about being diagnosed with a disability as an adult be due your parents decided not to 'label' you.

Yes but there is surely nothing empowering about being unable to pursue your vocation because your parents had decided to get you diagnosed, as previous posters mentioned. Thats why i posted. To learn from people's experiences and make an informed choice.

@coodawoodashooda

Yes but there is surely nothing empowering about being unable to pursue your vocation because your parents had decided to get you diagnosed, as previous posters mentioned. Thats why i posted. To learn from people's experiences and make an informed choice.

So go back to my previous comment

it is not about empowerment

Like I said originally, it's shouldn't even be a choice parents get to make.

So if my extremely capable kid wants to join the army and cant, how do i justify that?

**Me too.

Our son is clearly ASD. He had classic features of Autism (stimming, etc) but is also very intelligent. There is absolutely no doubt. He’s been seen by an Ed Psych and a paediatrician. We went to our GP and we had a discussion about what we hoped to gain from a diagnosis. We looked at the NICE guidelines around treatments. We already knew we wouldn’t consent to him being drugged so he was more manageable, so there was very little that diagnosis offered him. We were told it would mainly be us as parents who were offered training in how to cope. Given our work experience we felt we could probably work that out ourselves. The GP and CAMHS cancelled the assessment and that was that.

It isn’t something that can be cured. There are no evidence based treatments that significantly improved the ASD child’s experience of the neurotypical world. There is no additional support where the child is high functioning so the label was purely that - a label. It served no other function at all so we didn’t bother pursuing it.

We have friends who did carry on and their experiences seem to have been fairly horrific, so we’re glad we didn’t go that route

In what way was your friends experience horrific

Wow.

First of all, ASD isn't treated with drugs. ADHD is in some cases. The shit that comes with ASD like anxiety and depression might be treated with drugs but there is no pill for ASD.

Secondly, no one is drugged to make them more manageable for others. If a child with ADHD is medicated then the meds are to make the symptoms more manageable FOR THEM.

If your child was in pain would you refuse them painkillers.

I couldn't deny my child something that could improve their life**

@Pumpkinstace

Just to clarify, this post that you replied to in shock, quite rightly, that you tagged me in, wasn’t actually me.

It was @MakingM

It wouldn’t let me quote properly so it looks like I wrote it but my reply was only In what was was your friends experience horrific?

Their views are definitely not mine

@coodawoodashooda

So if my extremely capable kid wants to join the army and cant, how do i justify that?

I would suggest if they are extremely capable they may not fit the criteria for diagnosis.

Thank you. But there are still issues and im sure theyre related to domestic abuse. Im certain. But it is so hard to communicate the oppression and the impact of it.

@coodawoodashooda

Thank you. But there are still issues and im sure theyre related to domestic abuse. Im certain. But it is so hard to communicate the oppression and the impact of it.

You are not being very clear about what is actually happening but an assessment for autism will only give a diagnosis of the person is autistic. This has been mentioned many times already. An assessment is just that, an assessment

Labelling can sometimes be damaging. However, I do think a diagnosis has it's positives in the cases where children need specific support and the diagnosis will enable them to get that support and therefore make learning more accessible or make their life easier for them in some way.

@Kneller92

Labelling can sometimes be damaging. However, I do think a diagnosis has it's positives in the cases where children need specific support and the diagnosis will enable them to get that support and therefore make learning more accessible or make their life easier for them in some way.

It's not damaging. What is damaging is people thinking they can control someone else's basic right to diagnosis. People deserve so much better than this crap.

@coodawoodashooda

Thank you. But there are still issues and im sure theyre related to domestic abuse. Im certain. But it is so hard to communicate the oppression and the impact of it.

So what you are speaking about as your hypothesis for the way your child presents is that he shows the hypervigilant state of children exposed to DA which is usually referred to as attachment disorder or difficulties. There are subtle differences between attachment issues and autism which an experienced team will recognise. Often this is seen in the purpose of the behaviour which in a child with attachment difficulties is related to the need to be "kept in mind" which is very different from the purpose of autistic behaviours which is usually about sensory needs or social discomfort/overwhelm.

Autism doesn't go away.

If your child struggles with certain aspects of life as a child, which I assume they do given that you suspect ASD, then they'll probably have the same issues as an adult with little or no support/coping strategies in place because you didn't want to "label" them.

No, it can't be cured.
There's no magic pill.
But there are resources out there for "high functioning" (as you put it) people that can help them manage and understand their own traits.
Extra support in school and allowing them to be more open about the issues they may be facing.

My DS and his dad have both chosen not to pursue a diagnosis. They both work in a field where they are assessed and scrutinised annually for suitability to do the job, and anything ‘out of the ordinary’ would need costly extra medical investigation and certification to enable them to continue with their license intact, so they are both content to privately assume ASD, with all the benefits their special interests and skills bring to the table, but without a formal diagnosis.

If you’re in a field where there is extra support or funding I can see why it would be a good thing, but in a world where it could lose you your license to practice then it makes total sense not to draw attention to it.

FWIW I work with neurodiverse young people affected by disability and/or trauma.

Leave the diagnosing to the professionals.

I think people are forgetting that diagnosis doesn't happen in isolation. It's not up to parents to diagnose or schools. If people are concerned at school or nursery an initial assessment is done to decide if further assessments are needed. If parents are concerned they can see their GP too.

The upshot is that blaming parents for failure to get diagnosis is erroneous. You shouldn't have to 'push' for diagnosis. What is this 'pushing', is it 'lying'?, 'twisting the truth', 'distorting the child's additional needs'? For assessments to be accurate an accurate picture of how the child is need to be formed. It is an assessment and the diagnosis happens on the say so of a number of professionals. 'Pushing' a diagnosis through is all wrong, makes it sound as if it is not in anyway professional, unbiased or scientific...

"Often this is seen in the purpose of the behaviour which in a child with attachment difficulties is related to the need to be "kept in mind"
*or about feeling safe or protected.

@TheHouseIsOnFire

My DS and his dad have both chosen not to pursue a diagnosis. They both work in a field where they are assessed and scrutinised annually for suitability to do the job, and anything ‘out of the ordinary’ would need costly extra medical investigation and certification to enable them to continue with their license intact, so they are both content to privately assume ASD, with all the benefits their special interests and skills bring to the table, but without a formal diagnosis.

If you’re in a field where there is extra support or funding I can see why it would be a good thing, but in a world where it could lose you your license to practice then it makes total sense not to draw attention to it.

This is the exact sceanrio i envisage in the future.

Too many 'pop' diagnoses erode people's perception and understanding of the actual condition. I think this is already happening. I have heard people use the term 'autistic' already iin a disablist manner and as an insult.

For this to stop, IMO, people need to let parents leave diagnoses to the professionals...

So I would advise, op, to answer questions from professionals truthfully but step back from actively trying to pursue anything...