It suddenly seems so obvious that DD is autistic

[Isitlikelytobe]

DD is 13 and at secondary. It’s now clear to me that she is highly functioning autistic and I can’t believe I’ve only just realised. She masked all the way through primary but can’t manage any more. Reasons I think this:

Sleep- never slept more than a few hours from birth, barely sleeps now. Childhood spent trying sleep methods, all failed.
Eating - eats a handful of meals & won’t try any new food.
Self harming - started a few weeks ago (seeing a counsellor) I think due to not coping
Socialising - few friends, refuses to join any clubs. At primary refused to do ANY after school clubs even though her friends did. Have tried to get her to do Guides/Swimming/Gymnastics but she refuses. Goes to one session then cries about having to continue.

I guess because she has eye contact and has had friends and doesn’t have any sort of counting/obsessional behaviour I assumed she couldn’t be autistic. With the lack of friends at school, school tried to get her to join in with group activities but she refuses.

I know we’ll be waiting years for a NHS referral so going to have to try & afford private diagnosis.

I feel so upset to think she has a lifetime of not fitting in ahead of her. No one in my or my DHs family have autism so it’s a shock.

Do Ausome Trainers Parenting your Autistic Child course. Its online. Theyre Autistic people. It will help you. Then you can help her.

Thanks for replies, they really help.
I’ve looked up some of the books & ideas suggested and the “autistic burnout” sounds so familiar.

I have spent a lot of time suggesting she tries hobbies/clubs as she is just so isolated. Her school are excellent at providing a wide range of clubs during and after school but she refuses to try any of them. She told me her life was “just school” & seemed sad about that hence why I’ve been trying so hard to encourage the clubs.

I do try & get her to watch movies with me. In the past I took her shopping but she hated it & stormed round with a pensive look on her face don’t know whether she just hates shopping or the noisy busy environment too much for her. My friend has a dog & I try & get her to walk her (very old but gentle dog) & have suggested we sit outside local cafe with dog but she refuses. She says no to everything,

Her older sister who is 15 is a member of several clubs, loves trying new things, has hobbies & huge group of friends so I guess this doesn’t help as I should stop comparing them. But my oldest DD is so happy & has a varied interesting life and youngest DD has very little. Interesting about the online gaming comments. DD spends a LOT of time playing Minecraft with online friends & a real life friend. Though this real life friend doesn’t play as much as she now does a load of clubs including the school choir which DD refuses to join.

My daughter is 14, its become very apparent that she has ADHD and dyspraxia.

She won't allow food to touch or mix on her plate.
She won't try new foods, even if she makes it.
She HAS to be doing something 24/7.
She cannot watch films or TV shows as her attention span won't allow it.
She makes a mess and just walks off leaving it all, despite being asked to clear it up, her attention span is about 3 seconds.
She is always walking into things, dropping things, knocking things over.
She doesn't recognise signals in her body, for example if she feels sick she won't actually know until she's vomiting - thats fun!
She has to focus really hard at school and has to have something she can fiddle with.
Her friendship group is the same 6 girls.
She gets really anxious if she has to ask for something in a shop etc.
When doing homework she needs to be listening o music or watching something at the same time.
She struggled for ten plus years to get herself to sleep for fear something was going to happened to her.

She has been referred to CAMHS but the wait is years at the moment so our only option is to get her assessed privately. Its not something we can afford right now so just try and work with the way she is. Overall she's a happy kid but I do regret not getting her assessed as a toddler when we started to notice little tell tale signs.

Good luck with your daughter, its not easy.

@Discovereads
Self harming - started a few weeks ago (seeing a counsellor) I think due to not coping
Unlikely to do with autism as it’s just started. Usually autism related “self harm” is banging your head or hitting yourself or pulling your hair and this starts as a toddler- well before they know how to mask. More likely to do with anxiety or a personality disorder unless you’ve forgotten toddler things she’s done?

Just picking up on this point, without knowing the person it's impossible to categorically rule out autism because "as (self harm) has just started... (autism is usually) banging your head or hitting yourself..." etc. My children definitely didn't self harm in any way as toddlers; but in their teens they self harmed by cutting and through eating disorders, most definitely due to pressures of being autistic and not coping, they were diagnosed late into their teens.

There's no definitive presentation of autism, especially with girls who often mask well into secondary school years, when the increased pressures of adolescence (physical, social, academic) tips the balance and they become even more unable to manage "normally". A diagnosis early on would be useful for a child to understand their differences and help everyone in the family accept and learn how to manage those differences. But obviously an early diagnosis is often not possible, and like the OP I too look back and think why didn't we assess earlier in our kids' life?!

It is a lifetime of difference, that cannot be denied. But greater understanding and support could enable a rich and fulfilling life (I hope!). Mine are at university currently, there are difficulties but they persevere as do many others.

DD is 17 and is having her first ADHD assessment next month.
We actually had a Paediatrician tell us she wasn’t on the spectrum when she was around 8 but it’s now become increasingly obvious and I feel absolutely awful we didn’t do this earlier.
However, we have had to do all the research ourselves and are paying ££££ as nobody within The NHS wanted to know

I was going to say something similar. DD has recently after a long time of us trying, been diagnosed with inattentive ADHD and she started self harming around 10, with it escalating to cutting at secondary school. I've read that it's quite common for high functioning girls who spend a lot of time masking to self harm.

I would also say op, DD has a lot of these issues too and I did think she'd possibly be diagnosed with autism but the psychologist said ADHD, as did a previous assessment we had done for her, which wasn't a formal diagnosis. We had to go private to get a diagnosis because although we did get a CAMHS referral, she masks so well at school they said they couldn't diagnose her.

I think if her sleep is that awful, the first thing you need to do is sort it out. Then you'll be working from a better baseline for the diagnostic process - I'd say ask your GP to consider prescribing melatonin. It's often a godsend for people with disturbed sleep, many people with ASD take it w/o adverse effects.

Good luck OP - in terms of you being sad that she may have a lifetime of not fitting in, hopefully in time you and your family will be less stressed about that. Having ASD kids can be a real eye-opener to the sheer diversity of the world and also to other people's narrow-mindedness.

We’ve spent the past 12 years trying to sort out her sleep. As a newborn she slept no more than 4 hours a day & this pattern has continued. We now just go with flow. I’m pretty sure she only gets about 6 hrs a night now but manages to get up for school every morning & seems fine. All her teachers have said she’s alert in class, not sleepy etc so it seems like she’s just wired to not want/need to sleep.

Her sleeping issues are the least of our problems to be honest. Right now it’s the low self esteem & zero confidence worrying me. She’s had counselling for it that doesn’t help & it seems unfixable. Everything I’ve read said joining clubs & making new friends will help her confidence but of course she refuses to do this.

Everything I’ve read said joining clubs & making new friends will help her confidence but of course she refuses to do this.

That's a bit like saying that climbing Everest will help her confidence For now she may get more confidence from developing skills and doing activities that don't involve people much. Maybe something to do with animals? Or crafts? Or music?

Or an activity that is very structured or very goal oriented, something that may involve other people but not chitchat. Some sports are like that e.g. canoeing. Sometimes actviities like being putting on a play or singing in a choir (but those may not work for other reasons) We got a lot of mileage out of one-to-one music lessons with just a few minutes daily practice.

Everything I’ve read said joining clubs & making new friends will help her confidence but of course she refuses to do this.

Lacking confidence and being autistic are worlds apart.

You are quite right to add on to my comment.

I did say “unlikely” by which I did mean as not categorically ruling out autism when it comes to a sudden appearance of self-harm in a DCs teenage years. But thank you for adding on and ensuring that is clear.

My DC with autism self harmed from toddler age and it was pretty consistent in terms of what they did.