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?

I didn't intend to imply that as I fully agree it is not an illness.

i just meant when someone has something physical that affects their daily life no one blinks an eye at diagnosing/naming/'labelling' it, but with neurodiversity and those with MH difficulties it's frowned upon to do so. It's weird and hypocritical.

I'm on the fence. A diagnosis could be held against them in future.

Can you explain?

What are you worried might happen?

I was diagnosed autistic 30 years ago, and my 11 year old DS was diagnosed last year. There’s a huge difference to how I was treated at school, and how he is! I’ve noticed over the years that public perception is really changing, which is great. I never used to disclose my diagnosis at work, but I do now and I’ve not had an issue.

DS really struggled at primary school, but just started secondary school, and the supports they’ve put into place for him are amazing. I actually cried at the SENDCO because I was so amazed/relieved.

This is about your son’s needs, not yours. If he was left-handed you wouldn’t try and keep it quiet or force him to use his right hand. You’d buy him left-handed scissors and let him use his left hand. If he is autistic he will sometimes need specialist help and support- the way I see it autistic people are iPhones living in a world of Samsung phones and Samsung chargers. They won’t function without the right things around them.

I probably have three with autism- the youngest two are diagnosed and the oldest is still waiting on a different and extremely long waiting list as we didn’t pursue it til she was older (she masks very well). She’s quite unimpressed with me for not pursuing it more quickly for her- nothing more needs to be said I’m sure.

You know how on MN there’s this attitude that dc should behave perfectly and be parented strictly “assuming no sn”?

Well that’s exactly the attitude in RL.

When ds struggled to concentrate in a noisy classroom, teachers shrugged their shoulders and told him to toughen up - say “autism” and they bend over backwards to be kind. I can give you dozens of versions of that story, some of them involving hospitals.

If people showed a little bit more kindness to neurotypical children and schools were a bit more flexible, I’m confident it would have a huge impact on mental health. The best we can expect right now is some adjustments for the dc on the extreme edges who can get a diagnosis.

I was concerned (and rightly so) about “labelling” ds and it absolutely is a problem because there’s a huge amount of ignorance. But I left it too long and hurt him trying to protect him. If I could have a do over, I’d have been open (and demanding) from the get go.

Your dc won’t be less autistic without a diagnosis but it’s a much harder path.

This is my main concern.

I would say that it is a mistake to not seek a diagnosis.

The waiting period for diagnosis is very long, sometimes several years. If you start the process and get a timely diagnosis then it opens the door to a lot of support. If you wait until you need support to start, you will be struggling on for a long time waiting with no support.

Plus unless you're a medical professional you can't really know for sure that it's ASD. It could be something else, possibly something that could be treated.

Yup

Yes. I agree.

Can you give an example of where you think a "diagnosis would be held against them?"

This.

And it's not a label.

It is a medical diagnosis.

But you cannot not seek a diagnosis for an autistic person. They are only actually officially autistic with a diagnosis.

You can refuse an assessment for someone showing signs of neuro diversity. But I believe that's the same as neglect as you would be in a whole host of trouble if you refused to get any other medical conditions assessed.

If they need one to one support or special adjustments made etc of course it would help, but if they are achieving well and are streets ahead of their peers, having taught themselves to read at nursery age and being “that kid” correcting the teacher at the age of 7, making them feel that there is something “wrong” with them isn’t always a positive thing.

What's wrong is someone working in school thinking autism makes someone have something "wrong with them".

Your job is to support pupils emotional well-being to feel who they are is enough and be the best them they can be,

Actually we don't.

Court cases against parents decisions for their child's over rights Vs responsibilities should tell you all you need to know about that.

Parents have a responsibility to make the best decisions for their child.

They don't have a right to decide their decision is correct if it could harm the child.

I stalled with DD. It's a big decision to make especially if they're at the higher functioning end of the specrum. The label is lifelong and permanent. It will follow them wherever they go, and whatever they choose to do in their future it'll be on record. Although a diagnosis may be a positive thing in the current context and may lead to support etc, the future may not be so accommodating - education, job opportunities, visas, life insurance who knows what might be effected and you can't go back on it. I don’t blame people for choosing not to progress formal diagnosis for high functioning DC unless there are clear benefts and protections from doing so. A vague notion of 'support' may not be enough.

I understand OP. We have been down an unusual route. Formal, official NHS diagnosis of ASD when DD aged 10. We did not chase it but as DD had been involved with hospital and community paeds from age 2 due to medical issues, her paeds team put her forward for assessment.

We and DD’s senior teacher at school did not feel the diagnosis was quite right. We also didn’t like the reaction of many people to the label.

We then went down the route of getting a proper private multidisciplinary assessment by a team of 7 different specialists who assessed DD over a number of weeks. Around 20 hours of assessment in total. All the professionals had both NHS and private practices. Compare and contrast with the NHS assessment: a total of 4 hours that DD spent with two different SALT, the one hour we spent with the psychiatrist (who didn’t speak to DD) and a survey completed by the school.

DD came out of the private process with a very nuanced and complex set of diagnoses but NOT ASD. The GOSH paediatrician who oversaw the whole process said that he often saw the nhs put an ASD label on children who did not have it and it then meant they went down a certain route and closed off therapeutic aspects. For our part, DD has benefitted hugely from targeted (private) OT which we would not have considered had we accepted the initial ASD label.

As an adult with asd and adhd who wasn't diagnosed until adulthood, you are being very unfair to your child. You are basically denying them a part of their identity and probably setting them up for a life time of trauma and shame. Not knowing why you are different and struggling is incredibly difficult, you spend years wondering what is wrong with me.
I come from a time where girls were rarely diagnosed, I was labelled difficult, naughty and lazy. If I found out that my mother and father suspected for a minute I was neurodiverse and didn't do anything about it, I'd be furious and gutted.
Your being incredibly selfish here and I do hope you reconsider doing this to your child.

"I think diagnosis is really important so that the child/person understands themselves fully and doesn't constantly wonder why they might be different to their peers or struggle with/cannot do things others manage with ease."

This. And lots of things many others have said about the advantages of diagnosis.

Like a PP, I feel strongly that failing to pursue a diagnosis when autism (or any kind of neurodiversity) is suspected is neglectful and is failing your child.

Do people not care about the child's self esteem and mental health? Surely growing up autistic without knowing there's a perfectly normal explanation for being "different" is more than likely to lead to all sorts of unhappiness?

And the “support” offered to us/dd when diagnosed by the nhs: nothing for dd at school and a pamphlet and a highly depressing day course for me.

All of the time in our school gate community I hear things like, 'Bobby is coming for a play, he is autistic', or ''Amelia and Jenny fell out, Jenny has adhd'. It makes me very uncomfortable how communities take that information and use it to judge. In spite of lots of kindness nobody ever uses the label as a compliment.

But maybe they are just stating fact.

Neither of those 2 examples are blaming the ND child.

In fact knowing other parents included my autistic ds made others feel more relaxed to do so.

Especially when they realised he was a dream guest as he would NEVER break a rule and keep others in check

This is what I found too. My parents had great difficulty getting a diagnosis for my brother and getting a different diagnosis for me as a child so they didn't bother. As a result, my education suffered a lot.

No. We are going for a diagnosis.

I agree OP. In between the nhs diagnosis and subsequent revision, DD was labelled autistic as a slur by some very mean children (so she now sees it as an insult), and some parents told me they wouldn’t have her over as they “didn’t know how to handle” autistic children. I was the subject of a lot of gossip. Absolutely awful.

Thank you. Yes we have outside factors to consider too.

I don’t think they can join the army with an autism diagnosis unless it changed recently. Not sure about other emergency services.