Autism

[Dis19]

My step some is currently in the process of getting a autism diagnosis we have our firs appointment on Tuesday, we have not yet told him we think he has autism, we cant decide whether to tell him he could have autism or to wait and see what the doctor says. Our argument for not telling him is becuase we don't want to confuse him if the say he doesn't, he also doesnt have the understand to know that it isn't an excuse for his behaviour and it doesnt mean there is something wrong with him and we are worried that he will act up more because of it. If he does have it we are considering not telling him at all until he is older and maybe can understand it all a bit more bu we really don't know wht is for the best

How old is he?

How old is he?

How old is he? DS was diagnosed last year age 5. We told him nothing other than we were going to see some people for a chat, and a bit of play. Since his diagnosis, we’ve just mentioned it in conversation with family, kind of casually so it isn’t made into a big deal for him (even though it is for us!) - as far as he’s concerned it’s all business as usual, but with us learning how to handle his behaviour better iyswim.

@MoMandaS he is 9 years old but also has part of him that is like a 4 year if that makes sense

The team who assessed my 4 year old recommended that we tell him about his diagnosis. Our 7 year old is also on the assessment pathway and at that age, they send out a leaflet before the appointment telling you how to prepare them, apparently. We have told him, on their advice, because he's already very aware of his differences. But that might not be right for your child if he's likely to be worried or confused by not getting a diagnosis.

@ipswichwitch in the appointments do they mention autism alot and will they ask him questions like "do you think you have autism" this is another one of our concerns

@MoMandaS we haven't got anything from healios and no advice. He knows he is different but he takes that in a very different way almost like it means he can do anything. He is a worrier but he also tells people what they want to hear so we thought if he doesnt know he cant tell them what he thinks they want

If he does get diagnosed, I do think he deserves to know why he struggles with things that come easily to his peers. It will be better for his mental health as he grows up, and you will be given strategies to help support him which should improve his behaviour anyway.

No they didn’t ask anything like that - that would be a leading question and probably wouldn’t get much response from DS! In fact, iirc we weren’t even asked if we though he had autism. We were asked about his behaviour in a wide variety of situations. He was seen by a speech therapist, OT and play specialists. They asked him to act out things, or what would he do with the toy car in this situation type of stuff.

That is another of many options we considered, I think I agree that it might be best to wait until a actual result with a yes or no before we tell him anything then we can work out how to tell him

I understand, I wasn't sure we should mention it to him until they said we should in case they thought we'd briefed him on how to behave or answer or whatever, but I think the assessment wouldn't be affected by that anyway.

I should add that while we’ve never sat him down and said he has autism in so many words, we do talk to him a about the things he struggles with, what he thinks may help and how together we can work on that. He has heard us talk about autism so it’s been absorbed into his consciousness. He’s not really aware of his differences right now.

@ipswichwitch thank you that is much more reassuring that not telling will be okay, it's a very difficult position to be in without any professional advice

We have talked about it whilst he has been around but not really using the word in case he worries, he is a very closed up child and doesnt give much information about anything it has taken us since the start of the previous school year to work out what was wrong on a Friday turned out it was music and it was too loud but no family member or school could find out what was upsetting him

It is isn’t it. We weren’t given any information on how to prepare him for assessment, but maybe they thought if would change his responses to their questions. The clinical psychologist went to observe him at school and asked that we didn’t tell him so she could see what response he had to her being in his classroom. Telling him in advance may have caused him to behave differently towards her, and she wanted to see
if he’s question her presence (he had seen her before in a clinic appt) or recognise her.
Before each appointment we kept it casual, just said we were going to see someone, it wouldn’t be more than an hour and yes he could have sweets out the vending machine on the way out😂

That makes me feel so much better and I'm sure my partner will feel much more relaxed about not telling him, we have 2 appointments on Tuesday but they are all at home through video chat which is weird and we have had no information about how that works either but we will work it out I guess 😂 maybe have some sweets on the way back to school

I would, and have told my dcs. I always thought there was something wrong with me but didn't know what. I had to hide it. I found out I was autistic when I was on a course about autism for my son, when I was 44. It was such a relief. Knowledge is power. We all liked the book 'All Cats Have Asperger's '. I got it from Amazon.

My ds was diagnosed at 5 and we told him at 7 when he become socially more different to his peers.

I remember being in a museum looking at the enigma machine with him and saying "a very clever man called Alan Turing broke the code that machine made. He had an autistic brain. You've got an autistic brain too."

I had a tears in my eyes that he couldnt see because id been worrying about telling him for so long. I started mentioning big different kinds of brains and just general differences in people every now and again. Then I'd bring in why he found things difficult with " some people with autistic brains find it hard to let other people speak and to listen to them, we have to work a bit on this so you remember to do that".

Eventually I worked up to you have an autistic brain, this means you are autistic and you personally are not too good at this but you are excellent at these other things.

I know many parents of autistic children found the conversation hard but used books specially written for this purpose to explain it to their children.

I do think it's important for children to know why they are struggling in some areas, when the parent knows it's time to address these issues.

Yes once we have a diagnosis if we get one we will obviously tell him and figure put the right time but for now I think it will be best to not to say anything until we get that confirmation

Hello, my DS is 7 and we haven't yet told him. Ahead of the assessment we didn't see the point, we explained it him by saying we were seeing a doctor who is interested in how people think in different ways and how he helps children find the best way of learning.

After the diagnosis I felt I needed some time to come to terms with it myself. My son's differences are not immediately obvious to other people so I didn't feel it would benefit him to tell other people, I was worried parents might be less keen to encourage friendship between our kids.

My plan is to tell him eventually but ideally I would wait until he is old enough to make an informed choice about whether he wants to tell others or keep it private.