Diagnosis - what now?

[Dancergirl]

As suspected, my 11 year old dd has just been diagnosed with Aspergers. Dd doesn't know yet and the psychologist dh and I have seen have been discussing how and who should explain it to her (or if indeed we need to at all).

She is transferring to secondary school in September and is the only girl from her year going to a girls grammar. Should I tell the new school?

Also, dd is quite anxious about starting her new school quite understandably. She has met up with a few local girls from other schools who are also going to this school (friends put us in touch). Do you think I can ask the school if she can put in a form with these girls?

Also, who do you tell about the diagnosis? I worry that other children may judge dd and make it difficult for her to make friends. Does she need to tell people?

This is all very new territory for us so any advice would be much appreciated. Thank you.

You certainly need to talk to the new school. The senco needs to be informed so they can make sure she is properly supported.

Personally I would tell her as soon as you can, surely she is aware of something having been through the assessments anyway?

Speaking as an adult with high functioning autism/Aspergers (Aspergers is not a diagnosis that is commonly given any more), I think that it is absolutely essential that you tell her and invlove her in her treatment choices. She needs to know herself, her strengths so she can work with them and her weaknesses so she can work on them.

If you can afford it, try to find a private Autism Centre that offers a post-diagnosis support package for you and your daughter (e.g. effraclinic.co.uk/children#child-adolescent-intensive-package).

You also definitely need to meet with the SENCO at the new school, get a report from and Ed Psych and get a plan in place to support her learning and social development. Sending her into a new school without this support, which she will need, would be unkind.

I wouldn't worry too much about the girls she has already met. She is more likely to be able to find her own friends based on common ground if you let her arrive without a pre-arranged group based on the arbitrary connection that the girls are daugthers of a friend (of a friend?). For example, if there are clubs at school based on her interests, this is a much better way to find friends.

Good luck, and remember that the SENCO at school will have been through this before and can help you get everything you need in place. You will still have to drive the process and be "that parent", but you are not alone.

Just to also say do try YouTube as a resource for you and your DD. There are lots of cool autistic people (including young women) on there who your DD may identify with. Again I'd watch yourself first to see who you think might be positive for her and she might identify with, but I'd try "Invisible i", "Purple Ella" (a bit older but also has an autistic daughter), "Agony Autie" and "Aspergers from the Inside" as starting points.

There is also a book by Clare Sainsbury about her school experiences as an autistic girl, which may be useful ("Martian in the Playground") I'd read it first and check if you think it will help, but a lot of it resonates with my school experiences and I think I would have felt less alone if I'd read it as a kid (I'm not diagnosed but have autistic traits at least).

Others like "Odd Girl Out", "Aspergers on the Inside", and "The Electricity of Every Living Thing" are all memoirs from autistic women that are on my reading list but I haven't got to yet.

Forgot to say: "Aspergers from the Inside" is a man but has lots of interviews with autistic people including women.

"Autistic not Weird" is another good one.

Thank you very much, that is really helpful.

springer the psychologist did also mention high functioning autism, I didn't realise Aspergers is not being used any more.

May I ask you when you were diagnosed and what impact on your life it has had? Sorry if too personal.

There are also a lot of diagnosis stories on line that might help in terms of finding out how people's diagnosis helped them but also the challenges in coming to terms with it. A lot of the YouTube channels I linked to above include chapters on this!

Thank you so much.

One of the main issues we're struggling with at home at the moment is discipline. Dd finds the sound of people eating very difficult and also sometimes has a meltdown if it's too noisy for her. We obviously do all we can to make things more comfortable for her but I am very conscious that she seems to have a lot of power and control in the family which isn't healthy. My older two dds (17 and 15) find dd very hard to live with too.

How do you discipline a child with ASD and maintain authority as a parent and still take their needs into account?

We explain a lot in advance about what is acceptable and what is not. E.g. it’s ok the find other people eating too loud. It’s ok to ask to leave the table and eat in your room. It’s not ok to shout at everyone to shut up.

Look up about social stories, which are really useful for communicating about expectations and appropriate behaviour.

Also, the book Raising Human Beings is really useful for the topic of discipline, and not just in the context of ASD.

Will she wear ear defenders?

I wouldn’t discipline a meltdown, they aren’t in control of their actions so trying to discipline wont help. Ideally you need to work on stopping it get to that point which is obviously easier said than done!

We have ear defenders but dd says they don't work.

springer - I do explain to her when she's calm what is and isn't acceptable but sometimes when she gets stressed if people are eating near her, she loses it and calls them disgusting and starts shouting. I don't know if this should have some consequence other than picking her up on it when she's calmed down.

Op, I work with autistic adults. There is no disciplining autistic behaviours, the individual can’t control them. Work instead on you and dp and others in family having improved understanding of autism.
If dd had broken leg would you discipline for her banging into things and breaking them?
You can’t and shouldn’t discipline while dd is in distress or melt down, instead communicate appropriate responses eg it is not ok to shout at others, what else could you do? Walk away/ ask nicely/ tell me so I can help/ eat elsewhere..,., but it is a long battle. Meltdowns are her response to the situation, she can’t stop it nor can you, nor do you need to discipline her at that time, support her through it and know there are times for discipline and autism is not it. You can’t force her to be different.
She knows right from wrong, she is not purposely doing these things, she is expressing herself, she finds some things difficult/ so difficult she resorts to shouting at others (that’s how bad it is for her!).

Lots of love and support. You know when she needs telling off or consequences- don’t do it around her autism.
Appreciate it’s not easy