To be upset by dd’s behaviour

[Atypicaldancer]

I’ve posted in teenagers but got no replies and I’m feeling a bit upset. This is my problem I think, not dd’s. I just wish I could handle it better. Dd is 15 and autistic. She struggles with social situations and takes a particular dislike to certain people, such as my MIL (DH is dd’s stepdad). MIL was visiting her grandchildren (DH’s two dc) at ours and she had also baked a cake for dd’s birthday.

Dd had just come back from her boyfriend’s house and I asked her if she could say thank you to MIL. Dd didn’t want to, but then she came in, cut a chunk out of the cake, said it was disgusting and told me to fuck off. I’m mortified by her behaviour, but at the same time I know that she will have pressured herself to come in and be sociable, found it too much and lost control.

She finds MIL irritating because she talks a lot and so the issue with the cake will have been about control for Dd.

She’s now shut herself up in her room and has texted me, apologising for not being a good daughter.

I wish I had a better handle on things. She’s autistic, not bad - and I know I shouldn’t worry about how she appears to others. I just wish others could see the kind, funny girl that I can.

@Atypicaldancer

That’s Dd. When she was little she would try to avoid demands by pretending to be a cat, or saying that her legs don’t work. Now she’ll say she feels ill.

Yes this sounds like classic PDA.

Look up Harry Thompson PDA Extraordinaire (I think) on Facebook and also Laura Kerbey - she has lots of stuff on Facebook, YouTube etc

She has alexithymia I think. Well the psychologist said she had no idea what she was feeling and so any emotion was frightening for her.

Just went to the pub for one with DH and one the way back he was saying how our cat should be put down because he’s suffering and wheezing. Dd loves the cat and I just started sobbing. I think all the grief I’ve kept inside over Dd came out today. I couldn’t stop crying.

That’s why I don’t understand those people talking about consequences and being strict. This child desperately wants friends and has none. She knows her own behaviour causes that. She wants money and freedom. But she can’t go to school or leave her room. Why on earth do you think consequences would work? She’s already suffering consequences.

@Atypicaldancer

That’s why I don’t understand those people talking about consequences and being strict. This child desperately wants friends and has none. She knows her own behaviour causes that. She wants money and freedom. But she can’t go to school or leave her room. Why on earth do you think consequences would work? She’s already suffering consequences.

It's a really good indicator of how little PDA is understood, how a lot of behaviour is dismissed as being purely the result of shit parenting, and how commonplace imposing completely unrelated consequences has become (which isn't the best way to discipline children IMO). For you I imagine it probably feels like gaslighting!

I don't really remember my parents ever threatening me with a consequence and I was pretty well behaved. Most children want to do well and be good and will, given the chance.

Yes my other two dc are beautifully behaved, respectful and kind. Dd2 does hours of extra homework each night and is doing an additional exam prior to starting her gcse course. Ds is captain of the chess club, dd2 is in the elite sports squad, student council, student panel and prefect team and both play guitar. I have never ever had to give them a ‘consequence’ as such. They know what I expect and what society expects. They also know that dd1 struggles and can’t do what they do. It does really hurt my heart and make me feel that I can’t ask for help without judgment if that makes sense.

I know you feel very alone, but you’re not. Does your DD’s psychologist have other parents in a similar situation who would like a workshop with the chance to stay in touch? DD’s psychiatrist did this and even though there were a range of ages, there were enough teens similar to DD that I felt we were having the same experience. It was a relief and a help.

My DD won’t get any GCSEs even though she’s capable because she cannot cope with any demands.

The point about consequences (rather than punishments) is they are the natural manifestation of a certain course of action - if you dont take a coat you'll get wet if it rains, if you speak rudely to someone theyll be less likely to help you, if you throw your phone you'll break it. So you dont threaten people with them, you remind then that they exist. And they do apply to people with asd and PDA and adhd, the difference being that such people may find it difficult to anticipate the unintended consequences of their actions or to guard against them as a nt person might. So a person with ADHD might struggle with personal organisation as part of their disability but they will still need to find ways to manage this or suffer the consequences (and may spend their life doing both). So yes, consequences arent something your dd can opt out of and they are something that will help her learn to modify her behaviour but your job is not to give them to her but to point out they exist, and to help her manage them. Not to create them or protect her from ever encountering one .

There's a fixation on independence which I find a bit ableist tbh. During Covid, the legislation was amended to allow single NT people to have contact with family. And rightly so because it's recognised that it was a need of many.

Yet day to day, there's a constant she needs to learn xyz or never be independent. Some people will need additional support and that could be a PA or a cleaner AND can be employed etc.

DS1 has been shamed by staff about the prospect of "living with mum forever". Why my husband (his dad) doesn't get a mention is also a bit odd. But also there's far worse things than living with family.

Yes Dd may never be fully independent and I’ve made my peace with that. She still hasn’t been to school, but she did have a friend over today. It was a friend she had previously fallen out with, so I was a bit wary but it was ok.

@ArianaDumbledore

There's a fixation on independence which I find a bit ableist tbh. During Covid, the legislation was amended to allow single NT people to have contact with family. And rightly so because it's recognised that it was a need of many.

Yet day to day, there's a constant she needs to learn xyz or never be independent. Some people will need additional support and that could be a PA or a cleaner AND can be employed etc.

DS1 has been shamed by staff about the prospect of "living with mum forever". Why my husband (his dad) doesn't get a mention is also a bit odd. But also there's far worse things than living with family.

This is true and thank you for saying it. I so often feel confused about my own situation, having PDA/ASD and not being independent, but I do keep a full-time job. I can do that, but only if I get quite a lot of help with my daily living. I've accepted it's always going to be like that now, but I get quite a bit of backlash from people about why I'm not more independent and 'grow up', 'why can't you just' etc. I applied for a social care assessment, but as soon as they found out that I work full-time they pretty much laughed in my face. I felt so embarrassed.

My mum has suggested I apply for PIP. My brother gets it and he is also autistic, with ADHD. He works part time and seems to have fewer issues than my Dd to be honest.

The LA have put Dd on the waiting list for medical needs tuition- though they’ve said it’s a month waiting list.

The Ed Psych is going to assess her for the EHCP.

Atypicaldancer no, no, no. That is not acceptable. DD should not be sat on a waiting list for medical needs tuition. Write to the Director of Children’s Services reminding them of their absolute statutory duty to provide CSA pupils unable to attend school with an alternative education under s.19 of the Education Act 1996. Tell them if they do not begin providing provision within a reasonable timescale (which is not a month!) you will be forced to begin Judicial Review proceedings to enforce DD’s right to an education.

Usually the threat of JR works, but if it doesn’t contact SOSSEN for help with a pre-action letter.

As well as the EP assessment make sure all the other advice is sought, and you ask for SALT, OT and psychiatrist &/or clinical psychologist assessments. You need the correct assessments doing as provision in EHCPs is taken from the reports so if the reports are missing or vague and woolly DD won’t receive all the provision she needs.

Yes, do apply for PIP, ask to become DD’s appointee when you phone.

I will speak to the caseworker who is handling DD’s EHCP. They did try to push the responsibility back on to school for her learning, but I think the authority’s duty is to provide her with access to education.

She had a dentist visit recently and has tooth decay from the amount of sugar she eats and evidence of mouth ulcers which I suspect is down to vitamin deficiency as a result of her limited diet.

The absolute duty to provide education to pupils unable to attend school lies with the LA. Pushing the responsibility back on to the school or saying DD has a school place so they don’t have to do anything else as she has access to that is not lawful. It is likely to be a different team within the LA who are responsible for medical needs tuition.

Does DD cope with the Dentist? If she struggles with it ask for a referral to the special care community dental team.

She is ok with the dentist I think, though she did ‘run away’ straight after (she went for a long walk and said she wasn’t coming home - but eventually spoke to me and I picked her up) so not sure if that was a trigger.

She went to school last week. Got a 5 in her English language mock and a 4 in Maths and English Literature despite not attending school!
I am wondering if the low IQ is actually linked to processing speeds and autism - because they are not bad results for someone who’s barely attended for a year.

Her dad was asked to pick her up early though as she was spinning around on the teacher's chair and they said they felt they should call it a day. Stepdad picked her up as dad lives 45 mins away (not sure why they phoned him) and she was in tears. She’s not been in since, hasn’t left her room and is nocturnal.

Well done your DD :)
I mean this In a nice way but don't let the school make it too easy to send her home. She is year 11 and should be there.
Particularly in the light of her being assessed for ehcp.
Sending love it's not easy x

Thank you. To be honest I feel that she’s a problem for school and they prefer her not being there. So she’s just been left in a dark room all day, sleeping and then awake at night. She’s nothing to get up for.

It actually makes me want to cry for her.

I feel that she’s a problem for school and they prefer her not being there.

Sending DD home because it is easier for the school is an unlawful exclusion. Unless DD is unable to attend because of her MH refuse to pick her up unless the school formally exclude.

I’m scared they will be horrible to her and it will escalate into a formal exclusion.

Don’t be scared of a formal exclusion, it forces the school to follow due process, gives you evidence DD’s needs aren’t being met and you can challenge it.

She said the teacher got in her face and called her ‘self obsessed.’ I never quite know the truth with Dd, she does lie - but I do think the teacher got too close and wouldn’t back off.

I have been in your Situation and I promise you it's better to let them exclude (as they have to explain themselves) then just send her home.
It is unlawful.