Can't bear to spend time with DD, 15, due to her habits

[hockeysticks89]

My DD is lovely but 'quirky' and over the years I've tried to get help with her from so many agencies, as well as paying for private treatment, but it feels like no-one really thinks she's got issues. We did get an ASD diagnosis last year after many years of trying but in the same call as they gave the diagnosis, they discharged her and told me to google videos on great ormond street hospital website. She has had tics for a long time. She spends about half of her time being pushed around school in a wheelchair as she faints and says her legs and arms don't work- we're awaiting a hospital appointment for this but people seem very casual about that, as if it's no big deal.

I've realised tonight how uneasy I am with her, subconsciously. I always feel anxious when I see her around the house as she always does things which would be considered annoying, ie she'll run into a room you're in, makes a lip smacking noise for several seconds until you go to ask her to stop, then runs out. She likes to spend a lot of her time in her room, and only likes to spend small amounts of time with her friends, with whom she constantly has issues.

It came to a head tonight as I wanted to show her a work award I'd won, online. At first she gave me a high five but then she said she wanted to tell me a secret, then went to scream in my ear. As she did this to her dad the other day I pulled away and said no, so she just stood there laughing hysterically (and horribly) for about 60 seconds until I asked her to go away.

It's just dawned on me tonight that I try to avoid having too much contact with her, and I feel awful. Even before I tried to tell her about my award, I'd had a feeling of dread and almost didn't bother. I knew she'd do something weird.

She's very stressful to be around as she hoards, is seemingly incapable of tidying her room, eats obsessively and has to be made to brush her teeth and look after herself.

Is this just what it's like living with a child with autism? I don't know what to do and am worried our relationship will have long term damage. I can't see the wood for the trees and whether this is what I should just expect. I feel like I'm going mad as everyone else seems to be so casual about her issues. Any advice would be gratefully received. Thank you

That sounds incredibly difficult and you shouldn’t feel awful. Have you spoken to her about how her behaviour can sometimes impact others? Does she understand what’s appropriate/ inappropriate? Children with autism are often a few years delayed in emotional development so it may be that she’s just not mature enough yet to understand?

Gosh, hugs to you. Has she always been this full on?
It does sound like, at home at least, she's unable to control these actions.
My eldest looks normal and outsiders, family, friends and professionals never quite grasped how much support he actually needed. Until you actually live with someone and that person trusts you do you get to see all their quirks and behaviours.
Start keeping a diary and see if you can video some of her behaviours to show the professionals. I'm guessing she maybe doesn't show the full range of behaviours at school?

This sounds incredibly hard. I’m so sorry OP and I know there will be people along with better advice than me but one thing stood out. Could she be fitting when she faints? There type of seizure that make you just drop to the floor?

This must be incredibly hard for you to live with. I think I would be a bag of nerves living with someone who was ready to scream in my ear.

I wish I had some advice to give.... I totally understand what you mean. My 13 year old DD is autistic & 95% of the time is hard work and difficult to be around.
I love her to bits and so wish that life wasn't so hard for her. School is too much for her so she is at home 24/7 and we are her everything.
Our family life is more or less dictated by her needs.

Thanks very much for your replies and for the sympathy. I think the hospital will test for fits when the appointment comes through, however they always take place in school and usually on a Monday, which seems a bit improbable. At least one day a week she doesn't complete a full school day, and I'm conscious it's GCSEs next year. The school don't seem bothered, really, it's all very casual.

I'm just so sad, and scared for her future, wondering if she will ever be independent. Because we only got the diagnosis last year I didn't realise she had special needs for a long time and it's hard to get my head around. My elderly mum and dad don't really believe in special needs(!) and have always made me think she was just playing up.

Thanks again

Well the lip smacking and screaming sounds like poor attempts at interaction. Very familiar to me as a parent and I've had to specifically be cross and upset and in pain at the ear thing for it it resonate. Now with the weird stuff I say did you want to join me watching tv/cooking/tell me about maths etc etc

Having a teen with ASC is often stressful.
The lip smacking may be a tic that she cant control or it could be stimming.
She sounds unregulated and occupational therapy would probably benefit her.
Is she in a mainstream school? she might be finding that difficult to cope with and therefore her behaviour is worse at home.
Puberty and autism are a perfect storm ime.
I would reach out to autism charities and parent support groups in your area for support and advice.
My DD was diagnosed with autism at 14, it takes a while to come to terms with it but sounds like your DD needs more support and acceptance. If she doesnt already have an EHCP apply for one and ask for SALT and OT assessments to be part of her assessment, they were a real eye opener for my DDs needs, it worth paying for them privately if you can to get any provision identified put into her EHCP.
Also it may be worth considering counselling for yourself.
Tbf many teens may not be that interested in seeing a parents certificate, even non autistic teens are pretty self absorbed imo.
Friendships are hard to negioate for all teens and its a million times worse for autistic girls and spending a lot of time in your room is slso fairly common, as long as she can leave her room when needed it probably isnt an issue but i totally get how exhausting it all is trying to support her

Look into EDS and POTS. Sounds like she fits the bill, it goes hand in hand with autism.

That said she's not weird, she's stimming. Maybe you should take up some autism courses to learn how to deal better with your daughter?

I’m not trying to blame you here but as an autistic person with an autistic dd, in my opinion she is looking for authentic interaction and time with you. I understand why you would feel on edge around her but she has likely picked up on that are is trying to connect with you or make it better but is making it worse by going about it in the wrong way. I don’t want to project but in my experience when you are a autistic teen girl you do not feel loved and you feel very lonely. You may think you are spending time with and interacting with her lots but does she actually recognise this? She may not. I know I didn’t. She may not see the little smiles or snippets of conversations you have day ti day. If someone is not obviously directing a conversation at me, or hasn’t got my full attention then I don’t know they are talking to me and so it’s important that you are fully present with her if you can do that.
My dd is younger but her ‘silly’ behaviour gets worse if I have not given her some meaningful time. It doesn’t have to be hours of time but when you are autistic you feel disconnected from everyone and it’s important that someone shows they like you and have time for you.
I second getting the ot assessment. Ours was £500 and it’s the best money I have spent since diagnosis. It outlines needs in various areas and gives plans. Your dd sounds like she is not having her needs met and is dysregulated. Simple things like a weighted lap belt or a body roller might really help, it’s different for every person and the ot will tell you what they recommend based on her difficulties and needs.
She also needs a routine. It’s normal for teens to sit in their room and have friendship issues but if you can stick to some sort of routine day to day that would be good.
Sounds like she needs some help to communicate better. Just because she is verbal does not mean she is able to communicate effectively. She is trying to communicate with you but is struggling by the sounds of it.
School are not meeting her needs either so probably why she faints on Mondays. She needs a better transition into school after weekends. This could be going to the pastoral room and completing a visual timetable, or having a delayed start, it will depend as like I say each person is different and responds to things in different ways. Sounds like she could also do with better transitions around school from lesson to lesson, perhaps leaving the lesson 5 mins early so it’s quiet in the corridor or something. Also lunch in a separate area might work as I bet it’s busy at these times and it will be overwhelming for her. She is trying to communicate this to people but seems unable to, hence the wheelchair.

lots to learn but it’s not all hard work and once in place it will become easier. Look if there is any support groups near you. They usually run course me and have lists of recommended private professionals.

Im not saying life with my dd is plain sailing but with as much as we can offer in place life is pretty good. We are able to live ‘normally’ and do all the things everyone can, we just have to think about it a bit more than most.

Sounds like tics to me. Not all autistic people are 'emotionally delayed' as a PP suggested.

Is the appointment soon? It sounds like your parents attitude have negatively impacted your own feelings op.

Please educate yourself as much as you possibly can. Autism can present very differently in females than it does with males.

Many children grow out of tics.

Go back to school and tell them firmly that you and your dd require more input - if that's what you want. Think about what would be helpful- can you ask your DD what she thinks?

It is hard but it's great that you want to explore your relationship with her.

It’s difficult, sending hugs. Unfortunately agencies that should be there to help are swamped and giving parents the brush off/minimising needs is often their first response. Have you applied for DLA? It’s a benefit paid where children need extra support from carers. And does your daughter have an EHCP?

The lip smacking sound like a vocal atom to me as well. My DD has a few and I've only recently realised that my singing all of the time might be my vocal stim...

Do come on over to to SN board. There's a section about Teens and Young Adults in there

*vocal stim