Did you discuss possible ASD with your child before diagnosis?

[HatFishTeapot]

Hi, I'm new to this page and wanted some advice.

I have a 9 year old DS who has recently been referred for an ASD assessment, so I know we have a long wait ahead of us. Obviously as the assessment gets closer I will discuss it with him, but he is becoming very aware that he's 'different' (his words).
He realises that his emotional responses are different to other children in his class (he's not in school at the moment) and pre lockdown he was having a lot of meltdowns which he's now very conscious of when it happens in class. He has a lot of sensory issues which he's now realising not everyone else experiences.

There's lots of other stuff too, and I would be extremely surprised if he isn't diagnosed, I've suspected from a very young age.

The question is, in the meantime, should I try and explain to him what these differences may be? I don't want to preempt a diagnosis, or wrongly diagnose him, but at the same time, he's a very smart and pretty self aware child, and he can't seem to get his head around why his behaviour is like it is. I very much feel that if or when he's diagnosed he will find it helpful to know he has ASD, and will be able to understand 'I behave like this because I have autism' and not what he believes at the moment, which is that he's stupid or there is something wrong with him.

Any advice would be welcomed, if any one has this experience. Thanks so much.

Sorry I don't have any experience. My dd is in the same stage as your ds and we have chosen not to share it with her yet. But, or reasons are that she is asking none of these questions yet and is in a very child centred school so the need is not there. Also I'm very early in developing my own understanding of what this all means so can't support any questions.
I can only imagine that chatting about what could be going on in a natural way as and when it arises would be a relief if you were a young person finding yourself different without knowing why that might be. Does your ds know any autistic people? My dd knows a couple from school and it's all very 'oh that's just how so and so is, autistic people think differently so we just do this and it's all fine' so I think if she gets a diagnosis we'll pick that thread up and go from there.

We are waiting on the nhs (south east) for nearly 2 years for ados test so it could be a long weight! And still haven’t had the first appointment but keep getting letters sorry for the Delay.

In the end we went private oct time last yr ..... and we have still not told him or the other siblings.

All we say to the siblings is x struggles some times so we have to help him more and everyone is different.

We don’t want a label on him want him treated as a normal child. As some kids can be horrible however maybe some day we will explain .....

Good luck xx

If it answers lots of his questions or could give him a handle on the senior if what it is about him that's different? Otherwise the edges of his difference have no end in his mind eye? No-one outside the family need know if reactions of other's is a concern. You could say he had some traits that autistic people have without giving him a label.
Not trying to contradict previous poster, just rolling some thoughts around as I will be addressing the same question if we get a diagnosis and I think it helps to look at it from various angles.
I think if it was me and he was actually asking questions himself I couldn't fudge it, is have to share what his most trusted adults were thinking, to set his mind at rest that there is a reason, he isn't just not as good as the other kids. But discuss it in an age appropriate way.

Thanks both, there's some food for thought there. RealisticSketch I'm with you in the being open about it, we've always been honest with him about everything and he appreciates that. I think I just need to look for opportunities to bring it up. He doesn't have siblings and is in a very small village school, where as far as I'm aware there are no other children with ASD so there have not been the opportunities for discussion.

Ilovechoc12 can I ask how the private diagnosis went? Was there much of a waiting list? We've considered it as I'm very keen to get it done before he gets to secondary school. I've read a few things about some areas not being very 'accepting' of a private diagnosis once you then start trying to access other services, have you found this to be an issue?

Thank you both for your help, and good luck with your own experiences with this.

It was over £1200 can’t remember exactly.
However if you need / decide to take a private prescription those are pricy plus costs of medicine (private) ... you have over £100 plus each prescription average but it’s totally worth it for us as cant change it into nhs one ....

If I’d not don’t the private way I’d be tearing my hair out as my boy is very tricky so I’ve got tips / read books to help him on his conditions .... also school very understanding with diagnosis and helping him.

My boy has daily meltdowns too it’s exhausting but now I’m more understanding that he can’t cope and anxious than him just having a strop

Good luck

For us our thoughts at this early stage are... My dd is in a small village school too which has been brilliant as they can adjust to each child, so her quirks don't matter and create very little friction in her day (they have been brilliant). Which was the reason we are getting her assessed as advised that secondary school can be quite different as expectation to conform is higher and parents who want special consideration without a formal reason can be seen as fussy parents without a diagnosis. Without adjustments she needs, risks of self harm and withdrawal from engaging with education go up. So the label offers benefits. If that happens we will tell her as there is no way other adults in her life will know something about her she doesn't. I'd rather tell her now while she's young so it's just part of the wallpaper of her life rather than throw it into the mix during adolescent angst with all that the rocky road to self understanding entails.
We do think that some people don't react well or have lots of preconceptions to a named issue, so in that sense we worry that a label could be a problem, but some people won't react well to her quirks anyway so we can't really do much about that with or without a label, formally we can push back against that in a education setting, if need be, with the label, without the label we wouldn't have much ground to stand on if a teacher takes issue with something.
Outside of education there isn't any need for anyone else to know really so then the label is a moot point.
At least that's my thoughts at this point. I think I would be more worried about their distress at being different than offering a possible reason if I was in your shoes. I was on the national autism website looking at the personal stories and it stuck me how once people got a handle on what they were dealing with it was a positive in their life. I suppose the stories on the website are self-selected so maybe there are people out there who would rather not know.
I know of one person in my circle who isn't assessing as the child in question is coping well and dealing with enough other life issues, so doesn't want to throw it into the mix at this point... But that's because the question arose in the teenage years.
It's a tricky one isn't it because you want to know if it would help, but can't until it's done.

Mine was a bit younger (7) and we didn't explain straight away but left it another year or so while we got our heads round it - even though we'd had suspicions since about age 2, the actual diagnosis was quite hard emotionally. We didn't tell anyone else for a while either apart from talking to school etc. However there reached a point when I was regularly talking to school, therapists, going to support groups, talking to other parents about it and he was going to find out from someone else if we didn't talk to him ourselves so we did, probably about age 8 or 9. It was massively better once it was out in the open, I think the longer you leave it the harder it gets.

Both my children have been assessed and diagnosed with ASD both times I spoke to neither one of them about it I sent we told them we were going to go play some games and have some chats. they asked if we had told my children about the assessment or what's happening I said no we haven't and they said good that is the best thing because then it gives the most open genuine unscripted if you will assessment.

@HatFishTeapot I made the mistake of thinking a diagnosis via CAMHS would suddenly give us the support and help. In reality, it gave nothing and we can’t even get assessed for an ehcp! My son was diagnosed age 6. The school changed nothing until I begged for support. I paid for a Saturday school for him and now he’s in private school and the change is amazing. I’ve had to remortgage to afford it. At the time he was too young to understand the assessment process but Kline he knows he has ASD and he hates it and says he doesn’t have it. He is high functioning at school and average ability, but he has meltdowns, massive sensory issues, ocd and a real obsessive nature which is exhausting. Looking back, We gained nothing from the assessment at all - as soon as they diagnosed, CAMHS discharged him. It reassured me to know I wasn’t ‘imagining it’. Other than that, nothing. I would at 9 be very open with him.

That's a good point. I don't intend to mention it to dd unless she is diagnosed but I have that luxury as she isn't worrying about it. Tricky one.

By the age of 9 (depending on the degree of impairment) it can be hard selling them the "we're just going to play a few games with the nice doctor" line. I only just got away with it at 7, he was starting to realise that his sibling and friends weren't doing any of it.

[quote Corblimbea]@HatFishTeapot I made the mistake of thinking a diagnosis via CAMHS would suddenly give us the support and help. In reality, it gave nothing and we can’t even get assessed for an ehcp! My son was diagnosed age 6. The school changed nothing until I begged for support. I paid for a Saturday school for him and now he’s in private school and the change is amazing. I’ve had to remortgage to afford it. At the time he was too young to understand the assessment process but Kline he knows he has ASD and he hates it and says he doesn’t have it. He is high functioning at school and average ability, but he has meltdowns, massive sensory issues, ocd and a real obsessive nature which is exhausting. Looking back, We gained nothing from the assessment at all - as soon as they diagnosed, CAMHS discharged him. It reassured me to know I wasn’t ‘imagining it’. Other than that, nothing. I would at 9 be very open with him.[/quote]
That's all just so unfair. Can't believe the school wouldn't adjust until you begged. 😔
It is sad for him that he hates it, I hope he can come to terms with it in time. Is there anything you are doing to try to help with that? I believe in non covid times there is an annual event where they can go to learn about it and connect with like minded friends. Would anything like that help him do you think?

Really sad to hear of you having to beg for support Corlimbea, it just shouldn't be like that. I think though as was said above, schools aren't always interested until the point that the child becomes disruptive. That's definitely the case for us, I've raised my suspicions loads over the years, and through supportive, they said he wouldn't need academic support so there's no benefit to a diagnosis as we'd get no funding. That's changed now that he's having loads of meltdowns, funnily enough....

I am very much in the same position and thought processes as you RealisticSketch, I want him to be taken seriously at secondary school and for us not to be seen as overly precious parents.

Also agree with the age thing, we wouldn't be able to get him diagnosed without telling him, he'd want to know precisely what was happening and why. And I'd have to give him about 3 months notice before meeting a stranger anyway! 😀

I’m very lucky that my job now makes it possible to afford to pay for support, including therapy, so he’s thriving now. It was a different story two years ago in his old school. He now goes to a Saturday group each week (online at the moment). I think you hit the nail on the head that he wasn’t and isn’t disruptive at school and passed his sats, so no support needed in the school’s eyes! Never mind that he was falling behind, self harming and terrified all the time,

Yes, get the ball rolling now in good time for secondary school. We didn't get any real extra support post-diagnosis (although his school were ok to be fair and he was already under speech and language therapy but that was very limited). However armed with the diagnosis I felt empowered to apply for an EHCP (school didn't support that at all) which was in place in time for secondary school, I'm pretty sure I wouldn't have done it without the diagnosis.

@Corblimbea

I’m very lucky that my job now makes it possible to afford to pay for support, including therapy, so he’s thriving now. It was a different story two years ago in his old school. He now goes to a Saturday group each week (online at the moment). I think you hit the nail on the head that he wasn’t and isn’t disruptive at school and passed his sats, so no support needed in the school’s eyes! Never mind that he was falling behind, self harming and terrified all the time,

You must be so relieved he is in a better situation now, what a great job you have done.

We were lucky that DD was only coming up to 4 when she had her final assessment. We told her it was some games to see how she played and how her brain worked. We already talked to her pre-diagnosis about different people's brains working differently, and the ways hers worked differently (being sensitive to loud noises like hand dryers etc).

Since her Dx we have told her about it and mentioned autism to explain things a few times but so far she doesn't seem very interested. She has some books about it on her shelf, which she looks at occasionally. As a PP said I really just want it to be part of the wallpaper, not a big thing that she suddenly "discovers" about herself when she's in the middle of a crisis.

Chris Bonnello at Autistic Not Weird has a good thing about talking to your children about their diagnosis once they have one - but I think at 9 I'd be raising the possibility before and telling him what it's all about. Even if he doesn't get a diagnosis, it's like his brain does work in an autistic way in certain respects, or he wouldn't be going through the process, so he may well still find it helpful to understand those ways. The Autistic Not Weird website is generally very good and full of good articles and resources (Chris is autistic himself and has also been a primary school teacher and a special needs teacher in the past).
autisticnotweird.com/when-should-i-tell-my-child/

I should have said she's 7 now. I don't want to ram it down her throat, so I probably mention it every 6 months or so when it seems relevant, or if she sees something I'm reading and asks about it. She's not disinterested - but never has that many questions. I think it's because she's in a small class and doesn't have too many sensory issues, so she copes OK with life at the moment - but I do think it's important she understands so she's got a good basis for understanding the difficulties she might have as she gets older. Only time will tell if it was a good idea or not, but overwhelmingly the autistic adults I follow on social media all say they wished they had known when they were younger, for exactly the reasons you say around self-esteem and self-understanding.

Thank you LightTripper that's really helpful and backs up what I'm thinking. I'll have a look at the Autistic Not Weird site, sounds really good.

I've just realised I linked to the old version of the article: he updated it recently and the new version is here:

autisticnotweird.com/when-should-i-tell-2020/

Website suggestion also helpful to me, so thank you very much LightTripper

I asked my autistic 10 year old DS, who was diagnosed last summer, what he thought. Of couse, not all autistic people will have identical views on this, but speaking for himself, it was a definite yes, discuss before first appointment. He said discussing at least twice was good. We discussed in terms of different people's brains work differently. Some brains have certain strengths and weaknesses or properties, that are useful to know about to help us with everyday life, e.g. being really good at concentrating on something you love, taking things literally, sensory differences. It did help that we knew as family friends at that stage several other autistic children and adults, so it was clear that it was no bar to friendship. It's good to know that autistic people exist even if there is no diagnosis in the end.
Telling him the diagnosis as soon as known was a definite yes, and he said he would have felt angry and let down if we had not shared tbis immediately.
My other autistic son, age 7, said "meh" - but we did also have the same discussions with him - I hope he will appreciate the candidness going forwards.

Thank you littleapple and your sons for their views, it's good to have that insight. You make a good point about even if he's not diagnosed, at least he will be aware of autistic people, and hopefully a better understanding of how his own brain works.

It's good from all your comments and the website article to know I'm doing the right thing, I think the next opportunity I get, when he brings up his differences, I am going to talk about it a bit more. It may still be ages (years by the sounds of it!) before a diagnosis, but the more he understands himself and we can work out what support we can give, then we're in a better position.

My daughter was referred at 6 after I went to the GP due to her challenging behaviour at school (school were not any help in this process). She only had a couple of appointments as most of diagnosis seemed to be based on observations at school. I thought she had ADHD and was surprised she was put on the ASD pathway. We told her the meetings were to investigate why she found school so tricky to manage.

She was diagnosed at 8. We told her straight away and she didn’t seem surprised. She had already told us she was different to other children. She is now 13 and able to have very articulate conversations about her diagnosis and the way she sees and feels the world.

In summary I think you can say the appointments are to find out why things are difficult for your child and leave the actual ASD bit if and when you get a diagnosis.