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?

We all sit on a spectrum of blood pressure but they still diagnose high blood pressure. The fact that people sit on the same spectrum doesn't mean some people don't have a clinical diagnosis of high blood pressure that needs managing differently from those with normal blood pressure.

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.

This isn’t what the spectrum is. It isn’t a linear spectrum with not autistic or mild at one end and severe at the other. This and this link explains it better than I can.

I mentioned SM which is a comorbidity because I was replying to @harrietm87‘s example which mentioned being non-verbal and asking how she would classify my DS.

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

Can you not just describe individual needs? Because distinguishing by using high functioning, mild or low support needs isn’t accurate. Someone can be high functioning (using the proper definition) and thus be categorised by others to be mild or have low support needs and still be unable to speak or use the toilet.

Everyone has blood pressure, so we are all measured in the same way; not everyone has autism.

Any school refusing help because of a lack of diagnosis is acting unlawfully. Schools have a statutory duty to make their ‘best endeavours’ to meet a pupil’s SEN diagnosis or not.

No, of course they weren't, and nothing I (or anybody else) have said suggested this. No one has made the point that because autism can't be cured it shouldn't be treated; in fact, most of us are making the opposite point: a diagnosis could, or should, be the pathway to therapy and better support.

The team dealing with your daughter have failed/are failing her. She needs more not less support. My DD has been in exactly the same position and had extra help when her anxiety became a problem.

I'm sorry you and she are going through this.

Those are the criteria for a diagnosis of autism not just 'neurotypical personality traits.'

What are the criteria? You're only on the spectrum once diagnosed.

Not everyone has high blood pressure. Everyone has some degree of social skills and interests which are the criteria for the diagnosis of autism.

I’m almost too scared to catch up on this thread enough to understand why anyone would actually write we are all on the autism spectrum. What rot.

Well If he doesn't have a diagnosis you don't know he's autistic?

It's sometimes so obvious though. My sister, mum and a friend knew before I got diagnosed.

I think my daughter is autistic. We are on the waiting list. I can't say for certain she has it.

Persistent deficits in social communication and social interaction across multiple contexts.
And
Restricted, repetitive patterns of behaviour, interests or activities

Symptoms must present in early developmental period (but may not become fully manifest until social demands exceed limited capacities).
Symptoms cause clinically significant impairment.
Not better explained by LD or GDD.

From DSM-5.

Agreed. Paediatrician said that was wrong too.

Was that in response to my post? He needed support at school particularly, was isolated, unable to make friends, struggled with noise, concentrating etc. When I compare his experiences with that of my own child, it's desperately sad. My son has been so heavily supported that it has made a huge difference to him and he has been able to stay in mainstream school.

That said, there is a woeful lack of support for autistic adults sadly.

It’s super offensive as are lots of the comments on this thread. People having in-depth discussions on autism at the very least should know what a spectrum is!!! Jfc and no, we are NOT all ‘on it’

You said "those are the criteria" in reference to my previous message, wherein I hadn't mentioned the diagnostic criteria at all. That was my confusion.

I'm aware of the broader description of diagnostic criteria.

I feel very split on this.

My DS has a diagnosis, he is aged 7, and this was as a result of the school pointing out his differences. We paid privately for his diagnosis, but the psychologist pointed out that whilst he met the criteria from the home screener questionnaire, he didn't actually meet the criteria from the school questionnaire. Had his diagnosis been through the NHS or CAHMS, he would have been dismissed at that point. He also doesn't meet any of Criteria 2 of the DSM-5, but because he has 'sensory seeking behaviour', he got the diagnosis. A few years ago he would not have been diagnosed. He also has suspected ADHD, which could account for the sensory seeking behaviour.

I got the diagnosis mainly for the future, just in case. He is doing really well. Very clever, well liked, we support him as a family.

School, despite being the ones who suggested getting a diagnosis, haven't offered any extra support or funding. They've said that he isn't eligible because he is happy and doing well in school. They won't support an application for an EHCP, as they claim he doesn't need it. Interestingly, they also started attaching autistic characteristics to my son which he doesn't have, such as writing in a report that he 'has troubles with transitions' and it took us pointing out that he doesn't, for them to acknowledge this. One of my DS's strengths is his flexibility and spontaneity. People do tend to stereotype autism, and because my son does not fit a lot of the classic autistic characteristics, I really fear he will be stereotyped, which has already started happening.

Diagnosis doesn't = support. Being the type of parent who is constantly in contact with the school, LA and has the money and resources required does. Having worked in a school, those parents are also the ones that get criticised and disliked by all the teachers!

@TheFormidableMrsC Sorry yes it was.

The only help they offered me was to join an autistic discussion group. I hate going out / chatting / don't drive.

Not everyone has high blood pressure, but they could develop it. And if they do they can have help to lower it.
You can't develop autism; nor can you cure it.

A diagnosis of autism seeks to determine whether or not someone has a neurological difference. This, unlike high blood pressure, is congenital and permanent. The associated problems (anxiety, OCD etc.) are lifelong and, though fluctuating, are permanent. Others with e.g. OCD may recover with treatment.

The diagnosis is not easy or perfect, but seeks to describe a congenital neurological condition, not a personality type. Alzheimer's is similar in that it can only truly be diagnosed post mortem, yet is diagnosed in life.

I didn't say everyone was autistic or refer to THE SPECTRUM. I said the diagnosis is based on attributes that are spectrums we all sit on - just like we all sit on a spectrum for blood pressure. But that doesn't mean we all have high blood pressure, only those above a cut off point are diagnosed with high blood pressure. Though the cut off point moves depending on age and location of testing. So it is with autism - only those 'above' a certain point on the spectrum of social skills and repetitive interests are diagnosed as autistic. But that cut off point has moved over time. The cut off point also changes with LD or GDD. Diagnosis isn't as clear cut as people suggest and not autistic people are also neurodiverse.

You don’t know what you’re talking about. It’s your own little theory that has no validity IMO and is offensive.

Some odd assumptions on this thread. If anyone's cruel enough to bully an autistic child then they'll do it with or without an official diagnosis.

A diagnosis of autism seeks to determine whether or not someone has a neurological difference.

No it doesn't. It seeks to determine whether or not someone meets the diagnostic criteria for autism. There are a whole range of neurological differences that are not autism and many have features that overlap with autism.

Do you think every non autistic person has the same degree of social skills regardless of any other neuro diversity they may have? Do you understand the meaning of the word 'spectrum'?