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How to start the conversation?

(14 Posts)
RufflingFeathers Wed 16-Jan-19 10:57:23

Does anyone have any experience of how to start a conversation with a child who you suspect has ASD?

My suspicion is that DD (12) will be totally mortified at the thought of being assessed for autism, she's incredibly self-conscious.

We've suspected something wasn't right for years, but over the last short while it's become obvious that she's been copying the social interactions of her friendship group, rather than instinctively knowing how to respond, which has sort of tipped the balance, along with other things, to lead us to think about getting her assessed.

I think my question is: How do you start a conversation about this? Do you think leaving the term 'aspergers' or 'autism' out of it might help?

Any advice welcome! Please be gentle

zzzzz Wed 16-Jan-19 14:38:44

I’d start by thinking about “something isn’t quite right” as a descriptor of yourself and how that would feel?

For example if I said “The way you think about your daughters behaviour isn’t quite right.” I would imagine you feel a huge range of upset/othering etc. I think you ideally you should have worked through all your own hang ups and clumsy thinking before in case to inadvertently cause damage.

RufflingFeathers Wed 16-Jan-19 14:54:30

Thanks zzzzz - that's really helpful. It's just a whole new world we're engaging with, lots to think through.

Do you have any thoughts about whether the term 'autism' is helpful to use or not, in the early stages?

(she has a lot of exposure to children with severe autism, so the term is pretty loaded for her)

zzzzz Wed 16-Jan-19 18:28:42

Is she a reader? I think you could carefully choose books to bolster “different is fine” before it’s suggested. You could also probably do the same with films. I’m more booky though so that’s easier for me.

The Rosie video is worth watching before too and the sensory processing one from the autism project. You could just let it all settle in her mind a bit.

I’ll try and find links.

Book wise things like TheCrysalids, A wrinkle in time, Charmed Life,....

zzzzz Wed 16-Jan-19 18:30:59

zzzzz Wed 16-Jan-19 18:32:20

Punxsutawney Wed 16-Jan-19 21:27:56

My 14 year old Ds is currently being assessed for ASD. We approached the school before we talked to him about it. By the time we had a chat with him we already had the letter for his initial appointment with the community paediatrician.

Like your daughter he is incredibly self conscious and I have to admit is not particularly happy with being assessed. The consultant actually told us to talk to him about those in the public eye that have an autism diagnosis. I really don't know if we went about it the right way. There seems to be very little information out there for parents who are thinking of assessment for children at secondary school, most info seems to be aimed at those with pre school or primary age children. At the moment we are not really mentioning it at all, I think we will try and engage with him more if and when he gets a diagnosis.

I do think that he associates the word 'autism' with those that have more profound difficulties, but we felt we had to talk about it as honestly as possible when we told him about the referral. I have some regrets about not pursuing a diagnosis earlier, things have been a real struggle since year 7 and an unsupportive school environment has just added to the stress. The teenage years are such a difficult age anyway and at times I have had doubts that we are doing the right thing but we feel that we are.

All we really want is for him to be happy and reach his full potential and we told him that was the reason he was being referred. We think that it will help him understand himself better and it will help those around him understand him too. Hopefully he will see we have always had his best interests at heart.

April2020mom Wed 16-Jan-19 23:06:10

My perspective is different. My children don’t have autism.
We don’t avoid the topic. We’ve had discussions about why our family is different. I hold conversations with my two. We talk about what it means to have special needs, about the scary scar on his back, why she is shorter than everyone else.. the list goes on. I make certain to boost their confidence. I also try to answer all questions. After our thought provoking conversations I hug them. This is a never ending discussion.
A list of goals sounds like a great idea.

RufflingFeathers Thu 17-Jan-19 11:17:28

Thanks to all three of you, this is really helpful.

zzzz that's wise to start talking/normalising it as a concept in our house. Over breakfast we discussed a relative who has recently being diagnosed as ASD, and how he just seemed like him, rather than anything changing since his diagnosis.

punxsutawny really appreciate you sharing your story. That's hard that he's resisting the possibility of diagnosis. I hope now he can get the support and understanding he needs.

April - helpful to hear about the conscious 'confidence boost' at the end of every conversation. These kids are so precious.

It feels like a long (and pretty scary) road ahead - I've probably read too much on the internet about the MH issues that girls with ASD can struggle with - need to just take each day at a time.

Punxsutawney Thu 17-Jan-19 13:48:36

Good luck with the conversations with your DD Ruffling. It does feel like a difficult path to assessment and diagnosis for those of us with secondary school age children. Young people are so much more aware of themselves and what is going on than a toddler or younger child would be.

betterwithasetter1 Thu 17-Jan-19 13:59:45

When we told our son about his diagnosis, we were careful to emphasise that he is our perfect boy, who we would not change in any way. We told him that we use the term autism to understand a little bit more how his brain works and to help us put in place the things that help him to learn at school and make him feel safe and happy. We explained that no two people in the world - with autism or neurotypical - are the same and that different is good. We looked at the breath of the spectrum and at the positives in the diagnosis, whilst acknowledging that some things are harder for him because of it. For example, he's a drummer. I talked about his noise sensitivity, which is very difficult for him at times, as also being one of the reasons he is quick to pick up rhythms. We also showed him role models in the public eye with autism.

GrasswillbeGreener Thu 17-Jan-19 18:53:43

I can't remember how I brought up the topic with my daughter, but I think she was about 12 when I first mentioned it. She went away and did some reading - and actually found it very helpful to do so. We had a detailed discussion with her and her tutor at school that established that getting a diagnosis would be helpful to her in terms of understanding / accepting herself, coping with other people, feeling that it's ok to need to be separate at times etc.

Now my daughter's a big reader, so that was an instinctive response from her. There may well be some books others could recommend that you could point yours to.

I hope you can make it a positive process, it should be if effective.

April2020mom Thu 17-Jan-19 20:08:46

Good luck. I explained that it’s okay to be different. I also talk about all aspects of their disability and diagnoses. We discuss why he needs help in the bathroom and why he has complete lower limb paralysis too. However I choose to focus on what he can do independently as well.
Books that were particularly useful for me include growing up with a sibling who has special needs and living with Spina Bifida too.

RufflingFeathers Sat 19-Jan-19 13:44:35

Thanks All, really appreciate these replies. My daughter isn't a big reader, but there seems to be a whole range of things to get started with.

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