New autism diagnosis for DD. Anyone with experience?

[Lookingforreassurance]

Hi folks,

My 6.5y/o DD has been given an autism diagnosis (with likely ADHD, but under review as school didn’t provide such strong evidence as clinic and home).

Diagnosis came literally as lockdown started so it’s been a strange time and I haven’t been able to see her with friends or living a normal life to reassure myself that it’s all ok and nothing other than a label has actually changed. I feel glad to have answers which help us support her better, understand what’s going on with her feelings and advocate for what she needs at schools and clubs etc, but I also feel a lot of worry for the future. I expect that’s a common reaction with a new diagnosis anyway, but the fishbowl of quarantine has a magnifying glass effect and I think it’s affecting my processing of things.

Anyway, with this in mind, I’d be so very grateful if parents of autistic girls might chime in with some answers to my big questions! Whether the truth is reassuring or brutal, I think I just need some tangible possibilities, because it all feels very unknown without being able to go out and meet other autism parents, autistic kids’ groups etc.

Ok, 3 questions....

1. She’s very strong-willed and while we can happily read about and practise how to use tools like putty or weighted blankets, calming techniques like breathing or stretching, when it comes to actually using them, she often refuses or puts up a fight. She wants to define and negotiate and control everything, and she haaaates to seem “weak” in any way. This includes accepting that a calming technique would be useful in a particular moment. Any tips? Could this improve with age, or...?

1. I have lots of worries about girls getting to 8+ and moving to conversation-based friendships, rather than play. And excluding each other for fun. How will she cope? What can I do to help? Is it better for her to use tricks to “fit in” and keep friendships ticking over, or is that worse because it’s like masking and will be exhausting and inauthentic for her?

1. Lastly, how’s quarantine going for you? DD is an only-child and I’m so worried about the lack of social practice over all this time. We do a couple of video chats a week with friends but obviously those are supervised, one-to-one (most of her struggles come out in groups), turn-taking is facilitated, and it’s much more limited than normal play. So is basically nothing like it, haha.

Thank you xx

can I suggest you look at the NAS (national Autism society) to see if there are any local support groups & than check your local area to see if they have any local facebook for autism groups there are more than they use to be thank goodness. The thing to remember is every child within the spectrum is an individual (obvious I know) & their trajectory into adolescence & adulthood is always go in to be vastly different. However what I would say (& I cant help you with some of your specific questions) is that I never anticipated how independent my dd would become - I don't mean she doesn't need help but she does have a productive life & friendships - her friendships tend to be with people in her asd community but thats fine as she says - we understand each other - seriously see if you can find a local support social group - goodness knows that is one advantage we have at the moment - time. Think of her as being younger than she actually is don't expect her to be at the same level of maturity. Look round for theatre groups for young people which are geared towards having access & support for disabled young people - think of what her interests are & see if there is any mainstream hobbies that she can access on equal footing according to what she is interested in & her abilities.

Thank you @mumwon, that’s so kind of you to reply. There are two support groups in our area that I’d like to join, but obviously there won’t be any meet-ups for... who knows how long! I like the idea of the accessible theatre group. She loves extra curricular stuff - she’s bright, confident and creative - but her inability to cope with group dynamics means she’s had to leave all the mainstream groups she’s been in (rainbows, stagecoach etc) as the staff couldn’t manage her emotions. I’ll look into that! X

sometimes your council might (might) have links or (when its open!) the Library is often a good source of information or sometimes the doctors surgery (when its safe to go) does she like construction toys or animals? If you have space do you think she might like to care for a small animal?

We have an 11 month old puppy. She likes playing with her but they get each other a bit overexcited! Construction toys make her furious (not great dexterity and she’s a perfectionist so it’s an explosive combo) but she’s obsessed with Pokemon, so that’s fuelling a lot of reading, writing, drawing and watching for her at the moment. So that’s good! And we just got a trampoline (don’t have a garden) which seems to be helping, as she would usually have a lot of exercise every day, pre lockdown. Strange to navigate two big things landing at the same time, really, but it will be good to meet local families in similar boats when this all blows over. Thank you :)

@Lookingforreassurance Hello, as someone with a similar (non)diagnosis (was not a thing back then when I was a kid) I can provide a little advice to (1) and (2).

As for (1) it will pass or get slightly better with time. It helps if the parent does not say "let me show you/let me tell you how to". You can say "I do it this way but you maybe can find out different ways it can be done". And no bog deal. Let her lose it, as long as she's not hurting anyone.

As for (2) that is hard, but she may be able to find friends that are different (I did) and best way would be some sort of sporting activity. If she starts young and persists (she may be a perfectionist which would help here) she will get better and gain her confidence from that, rather than from who likes her/is friends with her.

Also - get her a pet. It will help.

Not sure this helps too much but it was how I felt/did things and I am a (almost) normally functioning human now :)

@ZooKeeper19 thank you! This really is helpful. I think you’re definitely onto something with the gentle encouragement for calming techniques. Also good point about sports and skills for friendships! V useful :) thanks for sharing from your personal experience.

Hi lookingforreassurance , I'm sorry I don't have any advice for you but I am interested in your dd's diagnosis journey. I have a nearly 8 year old girl who fits many ADHD /ASD profiles and she is struggling hugely at the moment. The change in routine has been very difficult for her to cope with. I wonder if you wouldn't mind sharing and having a chat over PM, I would be very grateful.

@dildeewana messaged you