DD (14) thinks she's autistic, how do I help?

[Littlebluebird123]

Hello,
I know no-one can tell me either way from a few words on a screen if my child is autistic but I would appreciate any help.

We can't afford to go private and the wait time has been quoted to me as 4 years! I'm happy to put her on the list as it were and begin to save but either way it's not going to be the solution she's looking for as I know that even if she is diagnosed it doesn't 'fix' things.

Does anyone know of any help/support I can access without a diagnosis?

Just in case anyone thinks I'm just being dramatic, here are her reasons why she thinks she might be autistic.

She does not like to make eye contact as it's too intense and overwhelming.

She is often told her facial expressions or tone are wrong.

She is often told that she is mean or has offended people and she has asked what she's done wrong but they can give no answer. (I'm aware this is typical Year 9 behaviour but she said when it happens enough you have to wonder if it is you.)

She's deeply empathetic to the point where she can be completely devastated over a situation. (For example, she read a story about a little girl who sat on super glue on a toilet and had to go to hospital to have the seat removed. She had nightmares for a week.)

When excited she bounces and claps her hands into the air. (It's hard to explain but it's not a hugely average action for a child of her age.)

She has a deep connection with clothes. Today I suggested her top was a little small, perhaps we'd need to go shopping and she burst into tears and slumped to the floor as she loves the top. We had to have lots of discussions about how she can't wear her winter coat to school as it's too warm. I made her a scrunchie type thing for her pocket as she said she needed the feel to calm down.

She gets overwhelmed when she thinks she's made a faux Pas in a social situation. E.g. one of the girls moved seats and she said she was so upset she couldn't read the board or understand what the teacher was saying.

She cannot bear to be touched unless she initiates it. To the point where she visibly shakes if someone brushes against her. She says it makes her so uncomfortable that she cannot concentrate on anything else.

She hates certain types of textures in foods so will refuse to eat them if they're the wrong texture.

I absolutely realise that this may not be autism and I have received some information on sensory processing to see if I can help with that. However, the social side of things is so hard for her and she just doesn't understand why. She said it was so easy in primary and now it's so complicated. She is happy to be by herself but does want friends and to have fun outside of school too. She said it's affecting everything as she feels so lonely all the time.

I'm heartbroken as she's such a kind, thoughtful and lovely girl.

Well done if you reached the end!

Any help appreciated.

My heart goes out to you both. Definitely speak to the school SENCO as they can be really helpful in both pointing you in the right direction and also setting up strategies for your DD and teachers to use in school. I hope that you can find some ways that will help her.

Firstly there’s no need to be heartbroken.
Get a GP appointment to get the ball rolling. It took me two years to get diagnosed but I know it depends on your area.
Focus on her strengths and listen to what she finds challenging.
There are loads of YouTube videos and vloggers with autism that you could watch together while waiting for the diagnosis.
You sound like a lovely mum btw 🙂

Hello,
she sounds like my 10yo and we are on waitlist to get her assessed too but we are in ehcp madness and she already has adhd and dyslexia so it’s tough for these kiddos. Would massively recommend the Rebecca westcott and libby Scott trilogy about a girl called tally with autism. They are amazing and my ten year old is obsessed. In the books tally moves from 11-13 I think so might feel a bit young.

we have an nhs paediatrician who has referred her for the ados assessment (which is done by speech and language apparently) but wait list is so long we might go private for that and then come back to nhs to confirm diagnosis. (She needs the ADOS to be able to do this)

it’s a Rock and hard place for us as in order to access the local specialist support we need to have the diagnosis but with the label can come assumptions and judgement. I was diagnosed with adhd two years ago and it was transformative for me though and I think I am probably autistic but haven’t pushed that diagnosis yet.

atypical on Netflix is quite sweet and funny but about an autistic boy who presents very differently but it’s cute.

also get an OT assessment if you can (nhs waits again very long so we went private). That by far was the most helpful for us. We now have a sensory swing, compression sheets and a bumbag full of chew toys and fidgets and they all help her regulate!

Our 12yo has recently been diagnosed after a very long peocess. What we have found out since is that all the services and support that have been signposted to us now we have a diagnosis all officially state that they are open to anyone on the waiting list for assessment because everyone understands that a teenager needs help now, not in 4 years time. Also school SENCOs do not have to wait for a diagnosis before assessing her needs if sime kind of school situations are overwhelming. Reasonable adjustments can still be made without a diagnosis. Search on Google and ok facebook for what exists for you local area as it will vary.

Possibly this will sound old-fashioned but I found lots of helpful books in my local library. There are books aimed at parents who want to support an autistic child as well as books aimed at autistic adults/young adults which might help your DD directly.

Definitely get to the GP or ask school to refer for assessment (depending on what's done in your area) even if there is a wait time.

My son 9YO has recently been diagnosed and we've found that the diagnosis doesn't actually change very much while also changing everything. There are a lot of things as parents DH and i look at now and think 'That makes sense'. But we haven't changed a lot of how we parent DS. He was first referred when he was 6YO and we effectively began treating him that he was autistic at that point. So we did our research on how we could support him and help him and started implementing things then. We've always know he needs routine, he likes to be by himself, he needs time to decompress by himself after school etc. So we just did all of those things IYSWIM.

I think a diagnosis makes it easier for other people to understand his behaviour. If we say he's autistic now people just get him straight away. But school had already been doing things to support him as well and all his family and friends just know him as the person that he is IYSWIM.

I'd encourage you and your daughter to start doing your own research about autism and things that you can all do to help manage her behaviour and support her while she's waiting for diagnosis.

I don’t have an answer re the diagnosis wait but one thing really stuck out for me

She is happy to be by herself but does want friends and to have fun outside of school too….she feels so lonely all the time

As an autistic adult some of the best advice I received was to find my people - often we get on better socially with other autistic people and there isn’t the pressure to mask. Get enough of us in a group it can generate a more accommodating culture even if it’s not overtly ‘for’ people with autism.

Are there any hobbies she could try like chess club, programming/robotics sessions at library or nearest university, nature conservation, tabletop gaming, a technical/‘thinky’ sport like caving or sailing. You don’t mention if she has any special interests*

Careers wise we’re over-represented in IT, STEM and accounting.

*not all autistic people like these things ofc and not all people who like this things are autistic

My DD has some similar issues, also not diagnosed and she declined referral. (She's had contact with CAHMS for anxiety and OCD)
School have been very helpful. They'll put in support without diagnosis (such as leaving classrooms a bit earlier to avoid busy times)
DD found the first couple of years at high school extremely difficult to manage and was quite lonely and stressed but has now settled into a super group of friends. She found primary much easier.
I think we have always tried to parent her the way it suits her, which has probably been a good strategy.
She needs a lot of down time, not to socialise much outside of school, she dislikes a lot of social situations but loves others. Eating out is quite hard for her. She doesn't like to be away from home more than a couple of days. I don't ask her to do much at home but she's quite co-operative when asked. But I don't like to load her with expectations or chores.
There's quite a few things she does to regulate and is quite fidgety at home but ok at school. Lots of doodling! Sleep hugely improved with a weighted blanket. She's a great student, very hard working and focused and despite the odd teen wobble is great to have around at home.
We find home is her refuge, and I have always tried to help her negotiate situations she struggles with.

I think the advice about hobbies is very good. My DD met her best friend through a club. They were at different primary schools and now at different high schools but just clicked at this club. They also have quite a few mutual friends and now there's a group of them who have overlapping circles through school, hobbies and clubs. It's less intense than a circle of friends from school who also do lots together.

Thank you so much for all of your kind advice.

I'm only heartbroken to see her struggling. I have no issue with if she is or isn't autistic. I just hate to see her so sad and not being able to help!

Lots for me to think about and discuss with her. Thank you all so much.

Totally agree with Hoodieoodiewoodie. Agree that she probably has ASD and support her as best you can. Talk to the school SENDCO and see if there is any help available. Apply for an official diagnosis and in the meantime act as tho' she has one and seek out similar for her to connect with.

Something to consider is who else in the family may be ND; generally the apple doesn’t fall far from the tree.

Is it possible that you might have some traits yourself? The service provision works off the assumption that parents are NT, and relies on parents to spot the signs, find the services, advocate (expect to be knocked back a few times), push through the red tape, quickly adapt to new information, parent with perfect consistency.

It’s worth thinking about your own profile as dps because it directly impacts how well you can cater to a dc’s needs.

Recognising my adhd needs has made a huge difference in my home because I know I need to reach out for help and accountability in some areas - that beating myself up for being a shit parent isn’t enough! Some tasks are just beyond me.

The thing the stuck out for me is that she is 14 and she thinks she is autistic. What do you think? Have you never seen anything that you can now see may be autism in her behaviours? I say this because autism, ADHD and even Tourette's are doing the 'cool' rounds in social media. If you focus on learning about the diagnostic criteria rather than 'traits' (which anyone can have) and see if anything jumps out at you. Kids are making videos all over TikTok about having X trait and saying it's autism. I'm not trying to be dismissive but merely raise the issue so you are aware.

No do not act as if she has a diagnosis 🙄(though I don't know how you would). Because she may not be autistic. Talk to your GP about getting on the ASD pathway and the school SENCO. Diagnosis is not needed for an ECHP (education, health and care plan) to help her in school or to "treat" her bahaviours.They are just part of who she is reguardless nad coping techniques for her in no way depend on a diagnosis. School may also be able to offer some counciling services.

Just keep doing what you are doing OP. She clearly has an immense amount of trust in you to discuss this with you and you know her best when it comes to her reactions to situations. A diagnosis of ASD really changes nothing in the larger scheme of things (though 4 years isn't actually too bad of a wait tim). You have a "reason?" for the behaviours but it doesn't really make it any easier or change how you approach things. You know your daughter and how to deesculate her emotional moments and how to support her.

@Trivester
In terms of family, there is no one with a diagnosis, but I believe my DH has many typical ADHD traits and my mother has many ASC traits. I am quite similar to her but not to the same extreme. We're all of an age where diagnosis wouldn't be common so perhaps I'll never know.

I do appreciate what you mean and I think my DH definitely finds it harder than me. Certain things are far more 'triggering' for him than me.

@frydae
Thank you for raising this. Certainly a good point. I don't think it's the case with my DD as she's not very active on social media as it doesn't interest her. However, there is a fair bit of chat about these things at school so she's aware. She's been learning about ASC in her health and social GCSE and it seemed to 'click' with her so she questioned me about it.

I have thought there may be something 'different' for want of a better word since she was a toddler but it never seemed to bother her or affect school etc so I didn't do anything. She's a stereotypical high achieving girl who finds the school system good because she likes the structure, routine and familiarity of it all. It's only tricky now because she's finding the peer socialisation difficult.

@ForTheLoveOfSleep
I totally get what you're saying. My DH is certainly more inclined to the opinion that even if she has ASC it's not an excuse to opt out as it were.

I've been adapting and learning for years if I'm honest but my 'toolkit' isn't working for her current situation, hence asking on here.

Just wanted to give a quick update and thank you all again for your advice.

I spoke to school and explained her difficulties. There are a few things which they are willing to put into place and my DD is so much happier now. She feels heard.

Thank you again for your support.