Struggling with ASD DD, 14

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Just finding it so hard with DD and I know I could post on the SEN or child mental health boards but this seems a bit busier and am struggling to unpick what might be SEN (recently diagnosed ASD) and what is just being a teen.

she seemed a totally ‘normal’ kid at primary school but was a bit shy and struggled a little with change. She’s at a busy, slightly chaotic large city secondary and while is academically able and has a couple of friends she does nothing outside of school, rarely leaves her room, apart from hanging out with her one or two friends a little for short periods after school occasionally she doesn’t go out (v occasionally walks the dog that she wanted or mooches alone around charity shops).

she is insanely protective of her room, her dad and I never go in there, I think this is why she never has friends over, she also struggles with self care, eg bringing out washing/changing sheets/washing herself/toenails etc, it’s like she doesn’t realise they need to be done, I was a messy teen/soap dodging teen myself but I didn’t mind my mum going into my room and having a quick grab of dirty clothes etc.

our relationship is so tense, she is having counselling but it seems to have stalled, I hate seeing her so isolated while friends’ children spread their wings but then I don’t know if I should just be happy that she does go to school, that she is screaming less (two years ago we were under Camhs for self harm and suicide ideation) she says she doesn’t want to see people, she says she ‘hates people’, can this be the ASD or teen angst or just trying to shock me?

I guess what I am asking is the improvement on two years ago and progress at school, is that enough, I am expecting too much that she would start to look after herself/her environment and also build a life outside school/home.

really grateful for anyone else’s experiences.

Our experience isnt quite the same as yours but wanted to reply as have really struggled at times with my teen who has ASD. Although my DD enjoys being sociable she struggles socially with being overly intense. She had Cahms which helped a bit. This time last year she had a fixation on someone that wasnt healthy and in the end, I and the other parent had to intervene to end the relationship. This made life pretty hellish for a while after. She's also hypersensitive, takes offence easily which doesnt bode well in college/school life. However our coping strategies are that we got strict about routine, gave her some guidelines, since then she is happier overall, she goes to out of school activities and has got a saturday job which has boosted her confidence & gives me a break!!! She still has same social struggles in college but is improving, I think! Hope things improve for you

@duvet thanks so much for your reply, I’m glad things have improved for you and your daughter. Can I ask how old she is now and when things started to improve?

I’d like to set a few more boundaries and expectations for DD but her Dad is super reluctant for fear of setting her back, it’s so hard, she seems so unhappy.

Did you see article in the Times a couple of days ago about the rise in teens who never leave their rooms.

I have an asd daughter though younger. I think yes it is definitely to be celebrated thst she goes in and isnt suicidal. Might it be that school just takes it completely out of her.

Having an asd child...comparisons with others spreading their wings may be futile ? Your daughter is doing well in her own world....could you naybe set a few things down you would like to change and work on them slowly?

@waterrat thanks so much for your thoughtful message, I will look at the Times article.

I guess you are right, I should celebrate her progress rather than compare her to others but she just seems unhappy, I think she would like her life to change but isn’t sure how and maybe at the moment just going to school is enough.

I like the idea about setting some realistic goals for home too, just getting a little bit more on top of her room and self care would be a start and last night was a better night for this.

I totally understand though when they are unhappy it isnt just about comparison is it...its about wellbeing

My daughter hides a lot at school and the teachers say its fine as she is choosing to stay in the library at breaktime etc but I know in my heart she would rather be playing and socialising and it makes her feel lonely. She needs support though to do it

She sounds just like my daughter. I'm interested to know how you got an ASD diagnosis and what difference that actually makes?

I think the beginning of this year it started to improve in some areas, she had been seeing SALT and eventually had a meeting with neurodiverse team which helped us all. She reassured me that dd needed me to enforce boundaries and be black & white about things. School was still a big struggle and college although started of quite well she is struggling with friendships there & the couple of friendships she had went pear shaped,not too sure of all the details. She has friends outside of college so I dont think it's just her! Despite this she does feel quite isolated in college which is sad. :-(

Does she have an EHCP? If not I’d get that underway and push hard for a social care assessment too to see can she have some social support.

@waterrat , that sounds hard, you want to wave a wand and for it to be right for them. I would say secondary school has many of its own challenges but there are a bigger pool of children so I hope she finds some kids she can connect with.

@NC30112021 it was Camhs who suggested she might be autistic but their waiting list for diagnosis was massive. I know a couple of people who were diagnosed as adults and they said it made everything make sense for them. Dd was initially reluctant to seek a diagnosis but in the end she said she ‘wanted answers’. We went private for the assessment. It hasn’t been a massive change but in the long run I hope she might accept herself better, the assessment suggested she would benefit from CBT for anxiety which she has been seeing a therapist for. School have also taken the diagnosis on board and teachers are aware of some stuff eg that she might struggle with group work, might not always make eye contact etc.

@duvet i’m sorry stuff is still hard, I guess progress isn’t linear but it sounds like she is doing so well in many ways and you sound a great support.

@Chuntypops I don’t think she would qualify for an EHCP, she is pretty academically able and able to cope in a chaotic city secondary, the school has to jump through so many hoops to get one and I just don’t think for DD the benefits would be worth it, she is on their SEN-k register, which is kids with additional needs but without an EHCP. She did attend a social group but it just fizzled out really and there is nothing this year.

thanks so much for all your comments and support, I’m sorry others are struggling but it’s good to know we are not alone and you’ve given me some positive stuff to think about.

Qualify for an EHCP?? It’s not about being academically able, it’s about ensuring that children are supported to meet their potential. They’re not likely to do that if they have significant health needs (mental included) or social function issues. I think you should read more about them because I think you have been misinformed, and by the sounds of it, by school. They don’t have to jump through hoops at all.

Your opening post sounds just like my dd13, OP. She received an ASD diagnosis a month ago through CAHMS after social problems at school caused her to take an overdose and a couple of years of self-harming. She manages school academically but sits out of the ‘noisy’ subjects. We were advised by the psychiatrist that she didn’t need an EHCP, a mainstream school with good ASD support may be enough. She’s also on the waiting list for BPI which is something I hadn’t heard of.

Who is advising on “not needing EHCP”? They are an education, health and care plan. Not just educational support.

I agree with @Chuntypops, EHCPs are about far more than academics.

@stclair HCPs often aren’t experts in education law. If DD isn’t accessing all lessons you should apply for an EHCP.

Did these difficulties become alot more apparent after lockdown?

Just to add, my DD1(very nearly 15) is in Y10 at a super selective grammar school; she is registered blind and was this year diagnosed with ADHD and autism. She has other disabilities, plus social, behavioural and emotional difficulties. I have battled for three years (DD lost her sight at the end of Y6) for an EHCP. Her grammar school would not support me in my request for an EHCP as they felt they were meeting her needs; they were wrong. I submitted my first EHCNA request last year, which was rejected by my LA on the grounds that my DD was meeting age-related expectations (I think this is actually illegal). My beloved dad died simultaneously and I hadn’t the heart to appeal or fight any longer.

I reached peak fucked-offedness with school (again) in June 2022 and sent off a blistering EHCNA request to the LA and my DD has just been issued with her full EHCP. Plus, the LA has provided additional high needs funding to school beyond the notional £6K spend. This is the school that did not think my DD needed an EHCP, advised me repeatedly that she would not get one and then, even when the crappy first draft was issued (I went back with eight pages of amendments to my LA) told me that no extra funding would be provided. Ha! They were so wrong!

The biggest piece of advice I would give is that you are the expert on your child, not school.

Thanks for all your comments.

@Daisy1245 she was very low in the first lockdown but seemed to bounce back over the summer, was going out, seeing people and regaining her independence. In the second lockdown she just seemed to fall apart and would stay in her room screaming, we were just scared and baffled, and we were referred to Camhs.

re the EHCP it has never been suggested by school, Camhs, the child psychiatrist and educational psychologist who diagnosed her (although there were some other suggestions) or the psychologist she is currently seeing with CBT (although I have a meeting with her tmrw and will ask her).

I’m not an expert (am so new to this but am trying to educate myself) but I struggle to see what what more could be done for her in school, she follows the lessons, has a couple of friends there and people she is happy to sit with/chat to and talks fondly about at home, doesn’t need to sit out noisy lessons (although has a pass to leave if she needs to), the teachers are aware so don’t have expectations of things she can’t manage (although can answer questions/read out her work in class).

I went to a meeting in school last night where they are trying to bring in targeted support for all their autistic kids with some individual termly goals which might be good but there was some concern from parents that this might be trying to get ASD kids to behave in a more neurotypical way (eg encourage masking) so we will see what happens with that.

@EmmatheStageRat wow, congratulations on fighting and winning such great support for your daughter, she is really lucky to have you advocating so hard on her behalf, I hope she can really flourish now and meet her potential, so sorry about your dad too.

with DD I guess I am struggling with what is ASD and just normal teenage angst, and how much I can push her or expect from her without it being too much of a war zone at home (esp with v laidback indulgent dad around, I work a lot of evenings so he is the one most at home with her too). This thread has really given me a lot to think about.

Schools and CAMHS often don’t suggest an EHCNA. Doesn’t mean one is necessary.

An EHCNA will enable DD to receive a comprehensive assessment of her needs. It’s not uncommon for hidden needs to be highlighted during the EHCNA. An EHCP could enable DD to access far more support than she is currently receiving - OT, SALT, additional MH therapies.

I went to a meeting in school last night where they are trying to bring in targeted support for all their autistic kids with some individual termly goals which might be good but there was some concern from parents that this might be trying to get ASD kids to behave in a more neurotypical way (eg encourage masking) so we will see what happens with that.

It’s poor practice for schools not to have IEPs (or something similar called a different name) for DC with SEN.

My pp should say ”Doesn’t mean one isn’t necessary.”

There was a similar thread recently about an autistic child who wouldn't let their parents in to clean/tidy and wouldn't themselves, they also strugggled with showering (more extreme case than your child - they'd forced the child into the shower fully dressed!)

Amongst all the really unhelpful posts there were some great ideas coming from those that understand autism. I wish my brain was awake enough to be able to remember them all for you.

Their room is totally their safe space and needs to feel that way.

Instructions such as "tidy your room" can be overwhelming to an autistic person (or adhd - its executive function difficulty and I find so hard even now in my 40s). There are so many different elements to the task it can help to break it down - lets clear up the rubbish on the floor/ give me any cups that need washing/ etc. it can be both overwhelming and internally make you feel you are stupid that you cant do something so "simple." It can also be a blindness to just accepting thats how it is and not moving the things in your room.

have you seen versions of the "coke can"? So many autistic kids "cope" in school however by the end of all the peopling/ managing all the tasks and expectations they are done. The smallest thing can set them off. My teen needs to come home and have an hour undisturbed just to "unwind" from the day. Any extra "demands" such as asking about their day can feel overwhelming.

Have you seen "Can you see me" a book cowritten by an autistic girl. It doesn't all correspond in our case but it spells out some of the thought patterns so well. "A kind of spark" by Ellie Mcnicoll has also been recommended and I intend to read!

The "hating people" can just be their way of communicating they have had enough of the demands of peopling and need space. Certainly school is enough peopling for my daughter and we have had to reduce what we expect of her outside of school.

Understanding, giving them space, and realising they have a lot going on can go a long way - but we still have difficult days and I do quite a bit in this area.

Oh saw previous post - yes enforced masking is not okay! They shouldnt have "eye contact" as a goal for example and part of my childs IEP is that they arent to be picked on to give an instant surprise answer but there's warning or done as part of a group. She is super bright (grammar school) but still autistic, as I now suspect I am as we have such similar struggles.

Anything that can reduce "demands" at home can help.

@ButterflyBiscuit thanks so much, I will look up the coke can and the books you suggest! I had actually posted on the room thread but I will read through it again. I think when she was growing up, even though we didn’t realise, there were just very few demands on DD as we never pushed her to do after school activities etc and it’s a quiet, one-kid household so it just suited her without us even realising at any stage she might have additional needs. She had lots of one-on-one play dates that she enjoyed. I asked her last night about the ‘hating people’ and she said it was just a heat of the moment thing as she was grumpy about going to see the therapist.

@Thatsnotmycar thanks, I will have a think about an EHCP, I don’t know that DD needs SALT or would accept additional MH support at this stage but OT might be helpful in managing her room/self-care. I guess I never c

Oops, never considered it as her needs seemed ‘mild’ in many ways seeing what others are coping with. I think she feels this herself too. School are trying to be better but their IEPs are pretty perfunctory, just a few bullet points sent to teachers.

@stclair i am so sorry your daughter is going through this too, I hope the diagnosis and accommodations from school can help her, it is such a hard journey. All I can say is knowing my autistic adult friends is they wish they knew younger so they could stop asking ‘why I am finding this so hard’ and know themselves a bit more and that is what we are trying to give our girls.

We dont have an EHCP tbh. As all my daughters needs can be met by an IEP and teacher awareness. But our school is pretty on it - the iep is good and she has a support teacher meeting once a half term to go over anything puzzling her (pre school trip she had extra where they went through Exactly What Would Happen and was able to liase with trip organiser on her behalf about things worrying her for example.)

I was a teen with ASD. Have sent you a PM hope that's okay.

Also I agree with everything @ButterflyBiscuit says. I need tasks broken down for me and 'supervised' by DH (we put something on I want to listen to, he sits in the room with me and keeps me on task for my share of tidying/housework).