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How to tell DD (just turned 9) about her ASD diagnosis.

(31 Posts)
Inmyownlittlecorner Mon 11-Jun-18 21:02:34

Today we were offered an Autism diagnosis for our year 4, just turned 9 DD.
She’s very high functioning, but isn’t great with social ques, recognising emotions, isn’t very interested in other people’s experience’s etc.
She has a group of friends at school that she is very happy with & socialises awkwardly but well.
We’re still trying to process the diagnosis. We thought that she possibly had Dyslexia &/or Dyspraxia & was just a bit socially awkward.
There are at least two boys in her class with Autism & a girl with unspecified additional needs & DD was chosen to be an “Autism Ambassador’ earlier on in the year. She visited a local school for children with Autism (someone from this school will be liaising wth her schools SENCO to help with DD) so she knows what Autism is, but I think her needs are different from any of the children she’s encountered in that she mainly presents quite neurotypical.
I want to tell her about her diagnosis in a positive light & without making her feel as if she’s too different from her friends, if that makes sense???
If anyone has any ideas, advice or experiences I would love to hear them.

Inmyownlittlecorner Mon 11-Jun-18 22:15:00

Bump

Flaminglingos Mon 11-Jun-18 22:26:10

Have a look at the girl with the curly hair website, it's specifically for women & girls on the spectrum. There's lots of resources and training courses/workshops for parents & professionals.

thegirlwiththecurlyhair.co.uk

lborgia Mon 11-Jun-18 22:29:09

If it would help, I can ask a friend - her daughter is in a similar position, and I have seen books etc at their house that you might find useful?

Inmyownlittlecorner Tue 12-Jun-18 16:37:09

Thank you for your replies.
Iborgia; that would be great, thank you.

Itchyknees Tue 12-Jun-18 16:40:34

We talk about how amazing it is to be neurodivergence, and how we have super powers at some things and not so much at others. This has really helped as my ASDers also have other diagnoses including dyspraxia and dyslexia. We talk about it in the same way as we talk about eye colour, it’s just how it is, and is beautiful. We also talk about neurotypical people too and how different we are and that’s ok.

walnutwood Tue 12-Jun-18 16:41:26

Do you need to tell her?

redexpat Tue 12-Jun-18 16:45:22

My superhero brain was recommended on here to me. Lovely book. Theres also superhero heart for siblings.

Chaotica Tue 12-Jun-18 16:50:26

Has she noticed she's different? Does she know anyone else with high-functioning autism she could relate to? I was in a slightly different situation as DD had already noticed differences between herself and her peers (by 10).

We talked about people thinking in different ways and it making some things easier and some things harder. Then we mentioned some of the things (which she'd noticed) about how it is difficult for her to tell what people were thinking or what they want. Like itchyknees said, it is like eye colour, so having it is no big deal because you can't cure it and it's part of what a person is.

It has done DD and us a lot of good to know about it and we even see the funny side sometimes (of both ASD and neurotypical behaviour). It's also helped at school.

Chaotica Tue 12-Jun-18 16:51:30

I would certainly tell her. But also say that she need not tell her friends unless she wants to. (You have to warn her that this might spread to other people.)

Inmyownlittlecorner Tue 12-Jun-18 20:05:45

I’m not sure she’s noticed. She knows she sometimes reacts differently & that she’s often not too sure how others are feeling etc, but on the whole she just gets on with stuff.
Thank you for all of these replies. I’m a bit tearful & still processing everything & reading these have made me feel more positive.

Itchyknees Tue 12-Jun-18 20:15:52

The days after diagnosis are hard. It’s like everything shifts slightly and is never quite the same. Be kind to yourself. X

RepealRepealRepeal Tue 12-Jun-18 20:19:16

I explained it to ds as his brain works differently. I've always preached the value in being different, and even weird, so he was fine with it. He sees it as just another thing that makes him him. He has some social issues, but is close with his friends. His biggest issue is interacting with kids outside his social circle.

Also, a friend of mine is a well regarded architect, who told him that he would flourish in an environment where the wiring of his brain would be an asset, that people would be jealous of his abilities, so he's looking forward to starting his new school, in those sorts of classes - metalwork, woodwork, technical drawing. But I think it helped having another adult telling him that his ASD could be a good thing to really drive the point home.

Inmyownlittlecorner Tue 12-Jun-18 20:35:16

Itchyknees thank you.

Repeal DD has a group of close friends too, but it took a long time to get them & she does struggle making new friends in different circumstances (drama class etc). She comes over as a bit awkward but also intense if that makes sense? She will often say something a little bit odd or out of context that I think make people a bit uncomfortable. Our next door neighbor has recently had an adult Autism diagnosis, so I was going to talk to her as she’s been very open about it.

iwishicouldbelikedavidwatts Tue 12-Jun-18 20:38:26

presumably she went through testing/observation, so i would present it matter-of-factly as an outcome of those appointments.

it's who she is and who she's always been, and it can be helpful to have that knowledge/understanding when it comes to making some decisions and choices later in life. like pps said about eye colour - it's just one thing about her that's been observed - it doesn't make her any less but it does make her different to the majority in some ways, and it's ultimately helpful for you as her parent(s), and for her in the longer run, to be aware of it.

m is for autism is a brilliant book, that i would highly recommend - you may feel it's not for your dd right now as the central character is a little older, but it's a great read for parents too.

sweetboykit Tue 12-Jun-18 20:47:39

I realised I have high functioning autism at the beginning of the year and I'm in my 40s. I was on a course about autism for my ds. I think you should tell her as I have struggled from an early age as I knew I was different. Females present differently to males. We mask better and want to fit in, but can't quite , square peg in a round hole. It's exhausting and has left me with depression and anxiety. Also the complexity of social interaction and language skills as she gets older may highlight more of a difference.
Autism as you describe it is a difference in the structure of the brain. It shows up on a brain scan. It gives and it takes. There are many good things about autism, remembering facts about special interests, concentration, noticing details, empathy (mainly in females,) the list goes on. There is so much help out there for areas of difficulty, although you will become her advocate and in my case I'm a therapist too.
The girl with the curly hair is meant to be good, but I have a boy. A really good book, which has lots of pictures and simple explanation is 'All Cats have Asperger Syndrome.' My ds loved it. We have a cat who is definitely on the spectrum!

RepealRepealRepeal Tue 12-Jun-18 20:51:50

I know what you mean. He can do the same. It's finding the line between still being themselves, and sort of meeting social norms. Does she get stressed out or worried in social situations, or before them?

It might be an idea if your neighbour would talk to her about all the good things about ASD?

Titsywoo Tue 12-Jun-18 20:56:53

DS was a similar age when we got his diagnosis and I was worried about telling him and making it into a big deal which he might find upsetting or confusing. So I left it for a while and slowly slipped bit about autism into conversations every couple of weeks. Lots of positive stuff about the advantages, successful autistic people etc plus the facts about how it affects a person.

In the end he just turned to me one day and , very matter of factly, said "Is it because I'm autistic that I do xxxx?". I was taken aback and said - who told you that you are autistic? He said "You did". grin

I never actually said it but he figured it out through my subtle talking. Made it easier on us all I think. Sitting him down for a serious discussion just seemed wrong for us.

Itchyknees Tue 12-Jun-18 21:20:41

I didn’t discuss it straight after the diagnosis, mostly because I couldn’t speak without crying. He was younger though.

rogueantimatter Tue 12-Jun-18 21:54:04

I told my DS it was similar to being left handed in that the majority of people are right handed and a minority are left handed. And that being in a minority can be harder sometimes because many things and ways of doing things are organised by right handers.

Inmyownlittlecorner Tue 12-Jun-18 22:09:03

I know what you mean Itchyknees. I’ve been pretty tearful for the last 24 hours.

Reapel she does find social situations stressful & would struggle to combine sets of friends, so a party with school friends & home friends she would probably just withdraw and/or be tearful.

rogueantimatter that’s a very good way of discribing it.

Titsywoo That was the approach I was thinking of. If DD isn’t interested or engaged then she’ll switch off & just nod or react how she thinks you want her to.

CookiesandQueen Tue 12-Jun-18 23:42:41

Social stories are great, you can even write your own and use images specific to dd. This makes it more fun and more personal to her. I work with children with autism and some children own it and accept it as part of who they are, others aren't ready to do that yet and that's fine.

There are also resources on the national autistic society's website. Books that a few parents I know like include All Cats Have Aspergers and The Big A, Me Myself and Autism.

I know it can be very unsettling after diagnosis but remember that she's the same person she was before. It can be scary and upsetting, but remind yourself and dd that her autism is part of the wonderful, unique person that she is. Having a diagnosis also means better access to support and resources that can be a huge help in the long run.

I'd also advise looking into local support groups if you have time, so you can share experiences, worries, and advice with other parents in a similar position.

Best of luck op.

Blinkingblimey Tue 12-Jun-18 23:50:27

Hi OP, sorry to jump on your thread but just wondering what channels you went through to get your dd’s diagnosis? I am becoming increasingly convinced my dd9 is on the spectrum but don’t know who to approach first. I have asked at school but they don’t really give a monkeys as academically she’s really able. I’d really appreciate knowing where to go next. Thank you.

Itchyknees Wed 13-Jun-18 00:00:08

Blinkingblimey it’s fairly straightforward to be assessed privately. See a private paediatrician and get them to sort the testing and referrals done.

Flobalob Wed 13-Jun-18 00:02:05

My DD was 8 when she got diagnosed a year ago. She kind of knew that we thought she might be autistic as we read "I am Aspire Girl" to her a few times and she said that she recognised herself in the book.
A couple of days after the diagnosis (when I knew I could talk about it without crying - even when you're expecting the diagnosis, you still need a good weep), I read "The super hero brain" to her.
We sold it to her that it was something to be celebrated and how pleased and excited we were. Lots of high fives! It was excellent news that she was autistic and how pleased and proud we were of her. We'd primed my parents that we would phone with the news so that they could congratulate her too.
Our feeling was that we'd focus on the positive and deal with the negative as and when it came up. Overall she's pretty positive about it and is very open and honest with people about her autism.

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