Parents of autistic older girls (or any autistic adults reading), give me your advice

[Generatenewname]

My daughter is 4, diagnosed as autistic, about to start primary school.

Amy words of wisdom?

What do you wish you’d known?

Thanks

Your child is still an individual so what worked for someone else may not work for you.

What kind of support plan is she on? Has she had a good transition? What are her strengths and what does she struggle with?
What type of setting is she starting at,

My dd is 14 and was diagnosed at 11. I wish I’d known that there WOULD come a time when she learned to manage her emotions a little more.

My dd is now 15 she has asd. She was a little social butterfly at school. She loved the easy to follow rules and routine of the school day. Friendships were easy for her and play was generally managed and the staff at school were very quick to stop unwanted behaviour.
Make sure the staff know your daughters quirks and personality and things that help her to be happy at school.

Ds1 (also asd) had an amazing nqt reception teacher. He was the best thing that could of happened to him. He structured things the way ds liked them, for example when kids did the daily mile, they all walked in the same direction rather than a free for all the freaked ds out.. he let him fiddle with his shoe laces at story time.. and gave him jobs outside the classroom when there was noisey music lessons. Hopefully the staff will want her to thrive and be wiling to help.

Dd only started struggling at juniors when they started growing up. I do wish we had an ehcp in place for her early now its been a 4yr struggle

My advice is always do your own research and be prepared for everything to be a bit of a fight.
What I really wish I'd known is that at 14 she's got friends and a social life, is doing OK and all those fights for support were the right things. It's not all roses but it's OK.

I thought this was an interesting recent thread in case you missed it OP.

http://www.mumsnet.com/Talk/amiibeingunreasonable/4309176-To-ask-what-its-like-to-be-neurodiverse

My only words of advice are to be aware that as she gets older the demands of education may at some point become too much

Transition to secondary school is often a time when they stop coping and they often fail to transition in spectacular fashion and at this point need much greater support

Never be afraid to do something different for your child, DD coped ok at primary but couldn’t cope at secondary so we took a different path, she’s 19 today and I know if we hadn’t taken a different route she wouldn’t be here now but it took great strength to change direction

By doing so we allowed her to succeed, she’s half way through A levels, just got great A S results and hopefully will be going to a local Uni next September

Trust yourself, there’s a saying ‘ when you’ve met one autistic person you’ve met one autistic person’ you are the expert on your autistic child

Sara Pascale has just published a book on being autistic. I'm enjoying it so far. You might find it interesting.

Read "Can you see me?" Written by autistic girl and editor.

It will vary sooo much. We had to NOT ask "how was your day" on the school gate, allow time to decompress and then it would come out later.

In retrospect she found infants quite overwhelming but didn't have the vocabulary to express that.

Any change of plan or change to the school day it really helped to know in advance and have a social story. We missed a few trips.

My DD is 28 and is a teacher but when she was at school it always felt like she was going nowhere. What I learnt is that you have to fight for what is best for your daughter, and you know her better than anyone else. Don't worry about being 'that' parent. It doesn't matter if the school hate you so long as they are giving your daughter what she needs. Be a pain in the arse if necessary, because your daughter has nobody else to fight for her.

@MrsWombat what’s the title please?

Autism is a wide spectrum with many different presentations. So there’s no advice that will work for all children with autism. If anything I would be sure to have her formally assessed through various tests that will pinpoint exactly her strengths and weaknesses and also what accommodations she needs as an individual. You don’t want the school applying a one size fits all/we do this for everyone with autism approach to your child.

[quote CrystalMaisie]@MrsWombat what’s the title please?[/quote]
Whoops wrong Sara. She's a radio 4 comedy writer. I'm a couple of chapters in and it's fab. www.amazon.co.uk/Drama-Queen-Autistic-Unhelpful-Labels/dp/B091B4HYW1/ref=sr_1_1?dchild=1&keywords=sara+gibbs&tag=mumsnetforu03-21&qid=1630160611&sr=8-1

Don’t assume anything. Some stuff is fine, some utterly random stuff isn’t. And see how you go but I’d advise against planning anything for after school - she’ll be exhausted

All different.

I'm 34 with autism and life has been hard. I've been totally vulnerable and caught up with nasty people but I'm ok. I have 4 children, I'm still working myself out. I can't work full time.

Will there be a quiet area she can go to if she needs some peace and quiet?

Will there be a communication book between teacher/parent to pass on information?

Will there be a review of her learning/social skills after half term with the teacher and the school senco?

I'm 30 and autistic. Primary school was easy for me. I had a very close friend and I loved the structure of the school day. My issues came when I transitioned to high school. I didnt cope with it at all and I was labelled an angry child because I'd have meltdowns and lash out. Luckily I had my mum who was amazing and did everything she could to help me learn how to manage my emotions, and always supported me when it came to the school.