Do you think a 6 year old needs to know he has autism (and be taught about it)

[Dolmiofordays]

YABU - no, he doesn't need to know he has it.

YANBU - of course he should.

Feel free to give your reasons why, either way.

yes, i would talk about it in an age appropriate way

DS1 is 15 and has known since he was young. We've always had open and honest dialogue and we've always spoken about his Autism with him, not about him.

It's the same attitude we've tended to take with everything, and so far it's worked fairly well.

Not read the whole thread but basically my DD (correctly) self-diagnosed herself with Asperger's at the age of nine when she came across a documentary about it - this was before we got the official diagnosis.

No one had mentioned autism to her before then.

She said she had a huge sense of relief when she worked it out. She felt that she wasn't the only one, wasn't 'bad', wasn't 'weird', wasn't 'wrong'. She then - in a very Aspy way - went on to read up and learn as much as she could about Autism. Got very passionate about the subject. She took control of her disability. (She thinks of it as such, I'm not getting into an argument about it).

You need to tell him.

@gypsywater

For those who have told their children, what have you told them about telling other children at school?

Be open. Be honest. Explain if asked.

I’m on an autism page on Facebook and a few people have said they haven’t told their children as they don’t want them to feel like it’s something that holds them back, it’s not something I wouldn’t do but it’s their choice and I don’t think you should get involved.

@TheSandman
That sounds like a good approach. Kids used to constantly ask me what was "wrong" with my DB and I was instructed to say "nothing". God knows how he dealt with those questions himself.

I drew the tree on the advice of his paediatrician, it was a simple way of explaining that he didn't think the same way as others because his brain was wired differently. He understood that he was different; not worse, just different. If you were to ask him, now as an adult, he would say that it was appropriate at the time. And yes, I have asked.

@TheSandman my BiL (hugely successful IT nerd) was diagnosed at age 44. He felt a huge sense of relief too and yes, like he'd found his people.

My friend spent the first 46 years of their life being told they were 'difficult' or 'stupid' or 'naughty' or 'ignorant' or 'bloody awkward' and a multitude of other things.
They were so relieved to finally discover that they were autistic.

@Sailorsgirl44 obviously this is totally your prerogative but reading your post it sounds as if you might be where I was a few years ago, knowing DS was 'quirky' but not necessarily thinking there was anything wrong. And I still think that, notwithstanding his autism diagnosis. There's nothing wrong with being on the spectrum and while it might cause certain issues, it also might not - every individual is different. It's really just a helpful piece of the puzzle, not a big label to hang everything on or make him think he's got an excuse if he misbehaves etc.

Consider though that every stage has different demands on our children, especially when they reach adolescence. You might find your son goes through phases where everything's great and others where he struggles more. Imo if you and he are both already aware of the possible reasons for that, you have a much stronger basis for communication and to be able to support him if he does need that. Rather than it being a big deal or something that feels negative and hard to talk about.

Obviously I don't know the reasons for you not being convinced about his diagnosis and that's fair enough, but the professionals will have seen hundreds if not thousands of children who are on the spectrum so they're generally well placed to make that call.

Just some thoughts, hope that's ok.

@gypsywater is there any way you could talk to your brother.Maybe ask him kindly if it's something he's considered? If he's only had one relationship and you think he's lonely, it does seem that it may be having an impact on his life. Of course it is possible that he's worked it out for himself and decided not to take it further, or that he will say he isn't interested. But it could also be a really positive thing and help him answer all kinds of things that might be puzzling him about his life. Either way it should surely be his choice, not your parents' choice, however kindly they meant it.

My son is 9 and has autism. At 6 he really wouldn’t have understood what it meant at all but each child is different. He now knows he is autistic but I don’t think he really knows what it means. He has learning difficulties with speech & understanding delays and quite young for his age. I just don’t think he knows what it truly means. He knows when things trigger him - for instance a noise etc and he know he struggles it with because he’s autistic

@LouislovesStewie I don't think there's anything ableist about the tree drawing - it's actually quite a good way of visualising what happens in autism, neurologically. What's with the 'broken' comments? It's not like she drew a tree stump or a diseased tree ffs. Different doesn't = worse and I think those sorts of comments say more about your own assumptions than this poster's.

Sorry, that would say @LoislovesStewie

@tradescantia
I think perhaps I could raise it as a general topic. What if he said he was going for an assessment though and we all know he has already had this and been diagnosed?!

What's with the 'broken' comments? I

I said broken. Because the twigs were not attached to the branches, in my mind that is broken.

The poster said it worked for them though, probably because people do all think differently.

dS1 was just turned 3 when he was diagnosed. We didn't tell him until he was about 10. It's hard to say why not before tbh. Anyway it was fine.

DS3 was dx when he was 4. He knew earlier because it just followed naturally with DS1. He also has ADHD and knows that.

I usually use the comparisons of other lifelong disabilities that require ongoing interventions (be that medical, developmental, mental/emotional), such as diabetes/epilepsy/down syndrome etc, etc.
If you wouldn’t bend over backwards to hide your child having any of these conditions then why would you hide autism from them?

My ds has complex needs as the result of a genetic disorder, he was only diagnosed at 9 - he is 10 now, he has learning disabilities, anxiety and communication difficulties - we were working with CAMHS on how to best talk about his diagnosis, but it has rather gone to pot with lockdown and shielding. In our case, it's not a case of not telling him it's just trying to get it right.

[quote gypsywater]@tradescantia
I think perhaps I could raise it as a general topic. What if he said he was going for an assessment though and we all know he has already had this and been diagnosed?! [/quote]
Hmm, I suppose you could say something vague like ‘I’ve got an idea you had some assessment years ago, not sure if autism was discussed.’ Or just be completely honest and say that your parents thought they were doing the right thing at the time. Maybe it depends how he reacts and take it from there.

I don’t know what medical records look like and whether a GP would instantly see that he’d had a previous diagnosis. There are long waiting lists for adult diagnosis, so if he is interested in pursuing it, it might be a relief to hear he already has a diagnosis.

My DS is 2.5 and diagnosed. I've told his sister his brain is different...ie. He is speech delayed but loves reading. So incredibly good at somethings but not great at others. I talk about it in the room when he's present and I think he is probably listening so I won't ever make it a secret. If parents hide the assessment then it seems they are ashamed and I don't ever want my child to feel ashamed or think he is wrong.

My ds was diagnosed at just 4, and wasn't much aware at the time - it wasn't Thomas the tank engine related and so didn't warrant his attention! I have never sat down and told him, just like I haven't sat down and told him he has brown hair or two legs!

We just always talked about it openly, and he asked questions as and when they occurred to him. It didn't feel like a bit deal!

It's not always as straight forward as, just tell them.
I have worked with many children with autism, most (who understood the concept) were aware they had been diagnosed, some were unaware. Some families worked with the pediatrician to plan how they share the information with their child. Some children really struggled with the diagnosis and needed a lot of extra support.
You know your child trust your judgement and keep it postive.

Is he aware of differences?

Is he feeling un-liked? Alone at break/lunch times?

Is he happy as he is?

My ds has autism and really, really wouldn't want to know because he couldn't process it.

He goes to a special school and has never shown any curiosity as to why he goes to a different school to his brothers.

His younger brother recently told ds we have a blue badge because he has a disability and ds hit the fucking roof!

We call it 'different brain' in this house and that works just fine. Other kids really understand it too as it is direct and to the point.

@gypsywater
IF he was diagnosed by the NHS, it should be on his GP records. Everyone thinks we only have one set of medical records, but we don't, we also have hospital records, and a few more specialised things like MRI scans. All can be accessed by request.

If he was diagnosed privately, the assessment and results may not be with the GP because the NHS does not accept most private diagnoses. However, it seems from your parents' reactions that it was an NHS dx or that the GP and school both had copies.

If he needs to access his medical records, for starters, we can all look at a brief summary of our own GP records online. It's the same login you use to order repeat prescriptions and make appointments.

www.nhs.uk/using-the-nhs/nhs-services/gps/gp-online-services/
www.nhs.uk/using-the-nhs/about-the-nhs/your-health-records/
www.nhs.uk/using-the-nhs/about-the-nhs/how-to-access-your-health-records/

I needed copies of a lot of medical evidence for my adult DD's PIP claim a couple of years ago, that's how I know.

Nowadays in England they are free.

There is a huge backlog for NHS adult autism assessments, many areas had around 18 months to 2 years pre-Covid. no idea on the current status.

The NAS has a directory of people who can diagnose autism in adults privately. www.autism.org.uk/directory DO read the disclaimer.

For the diagnosis to be accepted by the NHS, the person or team who diagnose must also diagnose for the NHS part-time as well as in their private practice.

I'd talk to him about it, particularly if he does something that's common autistic behaviour like monologuing at you for ages about an interest of his with no clue you checked out of listening 10 minutes previously.
Be straightforward, no hints or insinuations.
Comment nicely on the behaviour he's just shown, followed by 'have you ever thought you may be autistic?'

Depending on his response and if you think it's an appropriate thing to suggest, you could do an AQ test with him, it will be telling as to which answer you'd choose from your perspective of him and which one he chooses for himself, i.e how he sees himself.

AQ tests do not diagnose autism, they can pick out a likelihood of autism depending on the score and can be used as an indicator that someone would be a good subject for a diagnostic assessment.

Very short one www.nice.org.uk/guidance/cg142/resources/autism-spectrum-quotient-aq10-test-pdf-186582493

Longer version aspergerstest.net/aq-test/

Scoring for longer version aspergerstest.net/interpreting-aq-test-results/