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?

@harrietm87

We don't have to distinguish. Autism affects people differently and n the same way as the majority of other conditions. Nobody labels COPD or arthritis in such a way, yet strangely people who suffer these conditions usually manage to access the support/help they need.

The competitive autism is bullshit.

Nobody is taking anything away from someone with very high needs by having lesser needs.

So much this^

My DD was diagnosed at 8. She was well supported in primary even before this, but being diagnosed meant she got to a lovely school with specialist teaching for secondary* and when her mood and behaviour went seriously south at age 12 she was quickly supported by a psychiatrist from CAMHS as she was already seeing them.

Puberty is a notoriously difficult time for ASD youngsters, and if serious problems arise it may be difficult to get help when the waiting list is 18 months to 2 years long for CAMHS.

*even with a diagnosis it was a fight; so many parents chasing too few places for their DC. There were no undiagnosed children in the STF, even if, as a PP may claim, it shouldn't be necessary.

Having kids and an education doesn’t make you have low support needs.

What ParrotPoppy said.

I didn’t say anything about taking anything away from someone, it’s not a competition, it’s about a way to understand someone’s situation quickly, albeit bluntly.

And btw plenty of other medical conditions exist on some kind of scale of “severity” or however you want to describe it.

Autism is not an illness
It's something you're born with. Signs of autism might be noticed when you're very young, or not until you're older. If you're autistic, you're autistic your whole life. Autism is not a medical condition with treatments or a "cure".
www.nhs.uk › ... › Autism

This has already been linked to upthread, but it's worth doing again to illustrate there's no 'scale of severity'
neuroclastic.com/its-a-spectrum-doesnt-mean-what-you-think/

I think this extract explains it very well.
"People who can speak aloud and have reasonable control over their motor processing are often called “high-functioning,” and yet these autistics often struggle with employment, relationships, and executive function.
My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her.
But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely.
There is no question that those who suffer from severe neuromotor difficulties are extremely disabled, and I am not in any way comparing myself to them.
In fact, I am specifically asking people to stop comparing me to them. It does them a disservice to assume that they have what I have, only worse.
It is this assumption that dehumanizes people like Ido Kedar and Carly Fleischmann. It is this assumption that leads to them and many like them being treated as unthinking, unfeeling, and unhearing. It is this assumption that drives them to beat their heads against the wall in frustration.
If they have what I have, but worse, then they must be so very autistic that they can’t function at all. They must have worse interpersonal skills, worse information processing, worse social awareness.
But that isn’t true at all."

@BlankTimes as always your post is excellent.

You can describe their needs as relevant to the situation. Just because someone is ‘high functioning’ (I hate that term) doesn’t mean they have low support needs. You can’t neatly fit people into boxes like that.

Can I ask how you would classify one of my DC? He wears pull ups/slips, needs round the clock care and has SM which means he is largely non-verbal. He is also academically very able. He is ‘high functioning’ using the true definition of the phrase, but can’t by anyone’s standards be considered to have low support needs - he has an EHCP, a social care package, HRC/HRM DLA, tier 4 CAMHS involvement.

There's no way to understand someones situation quickly with ASD (and why would you need to?) It's a complex condition, and every case is different. There is no quick and handy scale of severity.

My DD recently got some good GCSEs, has no toileting or personal care issues, is stylish and creative, looks 'normal' walking down the street and can hold an intelligent conversation. She made herself a healthy dinner tonight. Does that mean she's 'mild' or high functioning?

Nope. She has no self esteem, no friends, has diagnoses of depression, an eating disorder, anxiety, and OCD; she has medication to stop her being violent towards herself, others and objects, has no concept of time/timetables so can't get anywhere on time or without help. She is paranoid and suspicious of everyone. She can't interact with shop assistants/bus drivers etc. so can't go out alone. She sometimes has meltdowns in public and (deliberately) knocks things over. She was a school refuser for years. She sees a psychiatrist regularly. I could go on and on but you get my drift.

I didn’t say anything about taking anything away from someone, it’s not a competition, it’s about a way to understand someone’s situation quickly, albeit bluntly.

Nobody who is involved with mine or my children's care should be making quick, blunt decisions about our autism. Anybody else is irrelevant.

Sorry meant to quote @Ifyouknowyouknowyouknow

I also see that other posters have already made my point better than I have!

I think a rough rule of thumb for people who don't understand autism could be don't assume that because the autistic person/person with autism you are discussing can easily do a certain task because you've seen them do a different task very capably.

The oft-repeated 'If you've met one person with autism, you've met one person with autism' holds true.

In the NT world, it's fairly safe to assume that if a person can do one task then they are very likely able to do several others that naturally follow on from the original one.

When someone is neurodiverse, that all goes out of the window and each individual has a set of strengths and weaknesses which show how autism, ADHD and all the other co-morbids and three letter acronym conditions affect them. Someone else with the same conditions can be affected very differently.

My DD always blows my mind. Can memorise facts and theoretical information long a sponge. Can she put it into practice? Not at all. Can she grasp that a car park isn't a road but cars still move? Not at all. Can she reliably walk on a pavement and not randomly run into a road? No. Has she got any social awareness or skills? No, not even comparable to the 4 year olds in reception. Yet she can sit through a teaching input, memorise the content, complete the task well and then it's like poof, that info is gone.

It all absolutely fascinates me!

My eldest has a private diagnosis of ADHD with suspected autism. I didn't bother getting him assessed for ASD as at age 14 he didn't want to and refused medication and all the help offered at school.
He is now a soldier in the army. But the suspected autism nearly cost him his career. He was refused but luckily appealed and allowed to continue his application.
My youngest child is most definitely on the spectrum but I will not be seeking a diagnosis just in case he wants to work in the military.
My husband also most definitely has ASD undiagnosed and served 22 years and his ASD made him the soldier he was.

I had no idea people diagnosed with autism are not allowed to join the army; how is that not illegal discrimination?!

Selfishly I wouldn't want my DC to join the army (no disrespect to people in the military, just not my preference for my children) but of course if that's what my DC wanted to do I would support them and wouldn't want them to have unfair barriers.

It won't stop me pursuing a diagnosis though and that's mainly because I think it will help my DC's mental health in the short, medium and long term to have a diagnosis and to have solid evidence to argue for support.

I’m just wondering what your thoughts are on the hypothetical higher risk of PTSD following military deployments, considering that there are studies that indicate co-morbidity with ASC and PTSD TheCatWithGreenEyes?
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?

For the Navy autism isn’t an automatic barrier, each case is judged individually.

I've posted before that it isn't so much things individual kids can do as the things they struggle with that defines the impact of ASC on their each of their lives.

In one way I understand why the military would exclude people with autism. I recall seeing a study that found that over 50% of high functioning teenagers and 20% of adults with high functioning autism exhibited aggressive behavior.

It would make sense to not take on people with more aggressive tendencies but then it does not seem unfair to the 80% that don't.

I've often thought the military and police should do some kind of psychometric testing to weed out the aggressive and power hungry people.

@harrietm87 why do people need to distinguish?

Do people with eating disorders also have to validate themselves using this ridiculous “my condition is worse than yours” shit? How would you describe a person who makes themselves sick once a day compared to someone who makes themselves sick 15 times a day? Mildly bulimic? Low level bulimic? High functioning bulimic?

Is the employed, home owning married father who has attempted suicide once this year “low level suicidal” compared to the homeless, unemployed, single man who has attempted suicide 6 times this year? Is low level suicidal acceptable ?

My mum didn't get one of my siblings tested because she didn't want them labelled and it was one of the things I think she'll forever regret.
As a result my sibling didn't get the support they needed to be able to thrive in school and dropped out without barely a qualification. They find it difficult to hold down a job and are struggling to understand themselves.
As someone who is waiting for an ADHD diagnosis and has spent the year speaking to adult women being diagnosed with ASD/ADHD as adulta I can tell you that it is cruel to not get the diagnosis that your child deserves. If you thought they were dyslexic or blind would you deny them the support? Yes a label can be used, but 9 times out of 10 it is helpful from school right through to getting help and support in the workplace.
If you truly think they may be autistic please listen to the people from the neurodivergent community who are telling you that label matters, even if a small minority want to be unfair because of it. It matters on every level and if you chose to not get them the support then you are being selfish, I'm sorry but it's true.

I didn't know about the risks of ASD and PTSD but my husband was severely injured and does suffer from complex PTSD.
I don't think there should be a blanket ban on ASD for military service but I think each individual should be looked at.
My husband ASD traits made him who he was. He recognises the traits in many of his colleagues and believes they helped not hindered military service.

Of it's so obvious, why does there have to be an official diagnosis to make adjustments?

I know if two kids who have subsequently been diagnosed with Autism who had parents reluctant to be assessed for fear of a 'label'.

It's really bitten them on the bum because they are hurtling towards the end of their secondary education and have been refused help because if no diagnosis. The SENCOs are having to prioritise the kids who were diagnosed.

The support they've had us minimal. By the time they get an EHCP in their hand, they'll have left school as it's taking approximately 2 years to get an EHCP now unless you're one of the lucky ones who gets no resistance from the LA.

One of those kids really ought to be in a MLD school but no EHCP so is stuck in a mainstream being badly bullied. I first met this child 10 years ago and my first instinct was "this child is different". Other kids spot it and see them as weird. At least if the child is assessed they can understand their differences better.

No one “needs” to distinguish. It’s not about competition or validation, it’s about the meaning of words. Your analogies are inapposite.

If autism covers such a broad range of attributes that it’s literally impossible to make any generalisations then I wonder why it is also essential for autistic people to know they are autistic. What does autism mean if it tells you nothing at all about the person with autism?

Why is diagnosis essential if really autism is just an umbrella term of a collection of attributes that varies massively from person to person? The support needed by any individual should be determined by the attributes whether they are diagnosed with something or not.