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?

Nobody labels COPD or arthritis in such a way

Of course they do. COPD even has stages and arthritis is often classed as mild, moderate severe.

And of course there is reason to distinguish between somebody who is unable to speak or use the toilet and somebody who is independent.

"There must be a very valid reason why the military will not accept those diagnosed with ASC otherwise they would be open to discrimination under the Equality Act surely?"

Presumably it's because it's not always possible to make adjustments to accommodate someone's needs. Those in the military need to be physically and mentally robust and be able to adapt to all kids of extreme situations. Lots of people are deemed unsuitable for the military.

Nobody labels COPD or arthritis in such a way

Of course they do. COPD even has stages and arthritis is often classed as mild, moderate severe.

My mistake. I used those as examples as my Dad has COPD and my DH has osteoarthritis - neither of them has been categorised so I wrongly assumed that was normal. Apologies.

This is where my reticence to push forward comes in. An adolescent can seek a diagnosis but not undo one.

But it’s also very hard to undo the damage from not having had the support and understanding of who you are.

This is where my reticence to push forward comes in. An adolescent can seek a diagnosis but not undo one.

Why would anyone be undoing a diagnosis?

But what does “who you are” mean? Every human being is different with strengths and weaknesses. If every single person with autism is different such that it’s impossible to generalise or even use more specific terms then what understanding do you get from the term?

(I don’t actually agree with this btw but it’s the logical conclusion of what some posters on this thread are saying).

@HelloDoggy my daughter has recently been diagnosed with ASD. She's nearly 9 and she's always been the model student at school. Speaks when she's spoken to, likes to get things right, always a peacemaker when there are arguments between friends. School didn't see any of her traits, and senior teachers questioned the point of pushing for a diagnosis, "because she's doing fine".

You talk about the strategies you're working on to help your son manage, but sometimes that isn't enough. This summer, an apparently harmless incident at school tipped DD into a period of severe anxiety. We spent a night in the safe room at A&E because she was trying to kill herself. She started refusing school. She stopped sleeping. I've spent the last 4 months dealing with the fallout of a throwaway comment in the playground.

Because she hadn't been diagnosed when this started, the only help I could access was a referral to a parenting course. Can you imagine how that feels when you're trying to stop your child deliberately causing herself severe harm?

You can't second guess what it's going to take for your make-do coping strategies to fall apart, and what the consequences could be.

I'd also suggest you have a think about whether it's really appropriate to teach your son not to stim "in case he's picked on". The pressure of always trying to conform is huge, and detracts from learning. The way I explain it to dd is that it's like trying to swim and pick up bricks from the bottom of the pool at the same time. She can still swim a length, but if she has to keep stopping to pick up the bricks she's going to get tired sooner and won't swim as far. Trying not to stim is the equivalent of constantly stopping for bricks. Now that she has a diagnosis she's starting to allow herself to do it, and her work is more accurate as a result. She feels better about herself too. Now it's just a thing she sometimes needs to do, not something she has to hide. Always hiding who you are, even with the people you're closest to, makes her really lonely.

...if it tells you nothing at all about the person with autism?

A diagnosis of autism tells you that someone has a congenital neurological difference. It tells that person that the reason they're struggling is because their wiring is different to others', not because they are stupid or socially inept. It is important that this is recognised, as it is a lifelong difference.

It tells their teachers that the reason for their screaming, not following instructions, or other 'bad' behaviour is not naughtiness. It tells me and my daughter that her OCD is lifelong, not a problem that can disappear with therapy.

The support needed by any individual should be determined by the attributes whether they are diagnosed with something or not

Two young children may both be crying in assembly and reluctant to go to school generally, but the support needed could be very different: one has has a difficult start to life and is shy; the other is autistic. The help that is needed for each will be different and may involve different agencies. The first may get better within a short while with a little understanding and increasing maturity; the second's difficulties will be lifelong and require different accommodations. It's not just the symptoms, it's the cause of the symptoms that's important, which is how a diagnosis helps.

It would be great if there were 4 or 5 different types of autism, easily identifiable and diagnosible, with symptoms that are easy to anticipate and mitigate so that adjustments could easily be put in place, but it is far more complex and varied than that, unfortunately.

OCD, anxiety, depression are comorbidities and not part of autism. Yet several posters are saying my/my child''s autism is not mild because ocd/anxiety/depression. If you put this together with 'autism is not an illness/no cure' then the logic is to leave these individuals with untreated mental illnesses.

Why is autism 'not low support needs because ocd/anxiety/depression/suicidality' but 'those support needs are due to learning disability so don't count'?

But what does “who you are” mean? Every human being is different with strengths and weaknesses. If every single person with autism is different such that it’s impossible to generalise or even use more specific terms then what understanding do you get from the term?

Autistic traits may be different, but we all meet the criteria for diagnosis which is little to do with the common traits most people attach to autism.

Also, the 'who I am' thing?

The diagnosis gave me peace and understanding that the past 40+ years were not my fault. They have given me the ability to advocate for myself in certain situations where I would have previously given up. I have non verbal episodes still but I understand I'm not a freak who just can't think of what to say. I have realised my vulnerability, all those times of thinking people liked me, men were interested in me, just for it to end badly. I have been in I don't k on how many toxic situations that I only recently was able to reframe and fully understand. Going forward I am aware of this and very cautious around new people who show such obvious red flags. I had no idea before. I used alcohol as a crutch for a good 20 years, managed to get sober as I could place to reason and the damage. I no longer feel that I need or should be doing things and I work on a basis of what suits me. This is a power I did not have prior to my diagnosis and it had been absolutely life changing.

Autistic traits may be different, but we all meet the criteria for diagnosis

And those criteria change and broaden. None of the criteria are black and white, they all involve arbitrary cut offs along a spectrum. 'We are all a little bit autistic' is condemned and yet everyone sits somewhere on those spectrums and non-autistic people sit below the arbitrary cut off for some (but not necessarily) all of them. Perhaps diagnosis needs to be done on the basis of brain imagery? Yet even there studies often create a false dichotomy by only comparing autistic brains with 'neurotypical' brains - not others with other neuro diversities.

HCPs are now seeing anxiety as absolutely central to the social experience of autism in young people, and viewing other features of autism (rigidity, controlling behaviour etc) as strategies for managing that anxiety.

@Lovelyricepudding

People don't sit anywhere on a spectrum.

OCD, anxiety, depression are comorbidities and not part of autism

Are you sure about that?

I got my own diagnosis at 35 😕

I've seen first hand the problems it causes not seeking a diagnosis or parents in denial. I have one friend who got himself diagnosed in his 30's and can't forgive his parents for not recognising his issues which made his formative years hellish. They dismissed him as "quirky". He wasn't quirky, he desperately needed help and it's been life ruining and he suffers with terrible depression now.

Diagnosis opens so many doors for support for both the child and the parents. I speak as the parent of a child who is diagnosed with ASD and more recently ADHD. Don't do this to your child.

What support was he after? I didn't think there was any?

Of course.

The fact that anxiety is suffered by pretty much all autistic people, and OCD type traits by very many, kinda suggests it's an integral part, not a coincidental comorbidity!

If "everyone sits somewhere on the spectrum", why (ignoring the people who need constant supervision, can't talk, etc) is it even a diagnosis?

You either have it or you don't. Why is it ok to say we're all a bit Autistic? You don't ever hear anyone saying that about any other medical condition.

Of course they do:

Social communication - you really think all non-autistic individuals are equally perfect in their social communication? That other conditions or possibly neglectful upbringing don't impact on this?

Restricted and repetitive patterns of behaviour, interest of activities - again there is a range in this and other conditions, culture and upbringing can impact.

It is because every sits somewhere on a spectrum social skills and restricted behaviours that clinicians often have to take a wait and see approach to young children to see how they develop and to determine if there may be other causes for difficulties with these. Yes the range of restriction in interests of most neurotypical individuals may sit well below that of autistic individuals but it is ultimately part of the same spectrum of degree of repetitive interest.

So camhs was right to discharge my daughter as 'anxiety due to autism' as we shouldn't seek to cure autism and anxiety of part of it so shouldn't be treated?

Not they don't.

The AUTISTIC spectrum describes AUTISTIC people, i.e. those who have a lifelong neurodevelopmental difference that affects every aspect of their being.
Neurotypical people do not sit on the autistic spectrum, which has nothing to do with measuring differences in neurotypical personality traits.

I wish we had been able to get my DD diagnosis sooner. It didn’t help with her particular school who I found really quite awful and unhelpful but it did help all of us and particularly DD understand herself better and now as an adult it’s actually good in the workplace where they do consider it and what she can do etc I would always recommend anyone seek a diagnosis. Even just to help the individual understand themselves and their family too.