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Autistic stepdaughter - is this normal?

(16 Posts)
Jadems9 Sun 30-Dec-18 20:03:49

Hi everyone,

Bit of a long post but please bear with me! (TL:DR is that my 14yo autistic stepdaughter has been acting younger and younger, now like a 5yo and we don’t know whether this is her autism, something else and where to turn to for help!)

For a while now my stepdaughter has been causing some strain on her family. She has various problematic behaviours but all seem to stem from a tendency to act like she’s 5. Her mum and dad are constantly telling her to grow up, whilst I’m not (because it isn’t working and she doesn’t need another adult yelling at her and because I don’t know if it’s part of her autism and something she cannot help?). She’s a really sweet girl, really loving and warm, but very young. We can’t fully trust her to not break something/get lost/hurt herself. Every week there’s some new action that we don’t understand.

She also has issues with food, so we have to hide it and she’s eaten some odd stuff like dried pasta when we’ve not been looking. If we let her she’d just eat and eat.

Then there’s some attention seeking behaviour like shouting right in our faces at the dinner table and lighting matches at home.

She struggles with exciting situations, like Christmas. She’ll shout and squeal really loudly (constantly) and then pull you around or knock something over accidentally (I’m guessing she’s overstimulated and can’t calm herself).

This has got steadily worse to the point where her mum has kicked her out because she’s not coping with it. We’re trying to get my stepdaughter some help, there’s a SEN support group in our borough that we think can help but she has to be registered with our doctor and for that, we need legal proof that she lives with us. I don’t know what legal proof is? I’d be really keen to avoid any kind of court and just keep things amicable!

It’s a really tricky situation and not sustainable. I’d really love to hear from someone who can shed light on any of this? From whether her behaviour is autism related, how to manage it, to getting her the help she needs and how to get legal proof that she stays with us. Thank you!

Viewoffriday Sun 30-Dec-18 21:14:27

Hi, can I first suggest you report your own post and ask Mumsnet HQ to move it to special needs chat or special needs children, as you'll get read there and get more responses, whereas I only found this board by accident!

I'm glad you're not shouting at her. I'm sure she's not able to help the behaviours you've described. Have you or your partner or the child's mum been on the cygnet course? It's really good on lots of the issues you've described. In my Borough you would get access through camhs.

She's going to really struggle with having to leave home, so I would expect those expressions of unease to become more and more obvious. And I would do everything in your power to provide stability, understanding and love to this kid.

I would also very very strongly recommend The Explosive Child by Ross Green. It's a brilliant book. Raising Girls on the Autistic Spectrum (sorry, forgotten author) is a good introduction and overview and I expect would really help you and you would find lots of it familiar.

There's a good blog called I think Steph's Two Girls, about parenting with PDA, a type of autism. Probably worth a browse for you too.

Jadems9 Tue 01-Jan-19 13:40:53

Thanks ViewofFriday! Lots of great advice and I’m looking at getting onto that course in my borough. I’ve ordered both books too! Also, Mumsnet have moved this over to the right place now smile

willitbe Thu 03-Jan-19 21:24:34

Jadems9 - hi, thought I would add my thoughts.

Being immature for age is normal for autism, but getting more immature - have there been questions of learning difficulties? My 15 year old ds has autism and has the emotional age of around 10.

Issues with food - my son had this plenty, the non-stop eating I had from when he was new-born, but did not related it to autism to much much later. Due to my son also having ADHD he has medication that has a side-effect of appitite suppressant, so this has really helped in getting some understanding, but he will still take food and hide it. Hiding food can also happen in attatchment disorder.

The next things you mention as "attention seeking" and "exciting" situations, could well be linked with sensory seeking or sensory avoiding, if you could do an ABC monitoring you might pick up some clues that could help. A being what is the antecedent, ie what happened before the event, either immediately before, or a change in routine earlier in the day. B being what is the behaviour exibited, ie what does she actually do. C being what is the consequence of her behaviour, ie what do those around do in reaction, what response/reaction does she get from others. Writing down the ABC time and dates over a few days, may help pick up a pattern... Is it certain noises that trigger a behaviour, or a time of day, or a meal time or..... you get the idea, then look at what are all the possible triggers for the bahaviour, looking at the sensory enviornment.

Does anything help calm her, certain smells, lighting, music, rocking.... or being given a big tight hug (deep pressure). IF you can work out how to reduce her anxiety levels and help her with being calm you will have made huge progress, the things that calm her might take a while to work out.

regarding legal proof that she lives with you, I am not sure why you would need to if one of her parents registers her? Otherwise it would be any letter from bank account to your address, or child benefit letter to your address assuming that her dad is now going to claim child benefit.

The two books recommended by Viewoffriday are a great start.

I hope this helps?

Jackyjill6 Sat 05-Jan-19 11:06:30

If her father has parental responsibility there shouldn't be a problem registering her with the same GP

TheMatriarch Sat 05-Jan-19 11:09:42

I know an autistic girl who is a similar age who does this, she has no learning difficulties, and it appears to be a coping mechanism to stress.
Situations can be very stressful to autistic people that others fine ok, and therefore can’t understand the high stress levels.
In the case of the girl I know the stressors have been identified but dismissed, so the behaviour continues.

Jadems9 Sat 05-Jan-19 11:55:14

Thanks willitbe - we’re thinking of getting her assessed for learning difficulties because from sitting with her and doing homework it does look as though she has some dysgraphia, dyspraxia and a bit of dyslexia.
I’ll do the ABC as you mentioned to see if there is something triggering her. Her behaviour does get worse with group family get togethers. When she’s one on one with me or her dad she’s completely different, like an angel!
Her dad’s doctor mentioned we needed legal proof, although he does have parental responsibility (as Jackyjill mentioned!). His doctor is a bit tricky to register with because I had a few hoops to leap through to get registered too, more than other practices (no idea why!). We need her registered there because we’re all registered there and also because it gives her access to a local support centre (Hackney Ark).
We’re not going to claim child benefit because her mum isn’t making ends meet anyway, but he is contacting child maintenance so that they know she’s with us full time now. If we were to take her mum’s financial support away it’ll cause a big fight, we’re trying to avoid this being nasty because it’s just not nice for my stepdaughter to go through along with everything else!

I think stress does seem to play a part TheMatriarch. I also wonder whether she just wants to stay a child, her dad and mum always tell her to grow up, and she doesn’t get on with any of her year group. As a child, she gets looked after, I’ll step in and do stuff (I know I shouldn’t!) and her nan will too.

Thanks everyone for the help!

BlackeyedGruesome Sat 05-Jan-19 21:02:19

telling her to grow up is not going to help.

sensory calming, wieghed blanket or wheat bag, or massaging hands or feet, work for my children, hugs, work too, breathing slowly and deeply.

sorry I am cold and can not type in coherant sentences.

Palaver1 Tue 08-Jan-19 13:47:30

Would you spend the time to read ten things every child with autism.wishrs you knew Ellen NOtbohm

Palaver1 Tue 08-Jan-19 13:49:01

Disability allowance

Palaver1 Tue 08-Jan-19 13:53:29

Oh and I applaud you for doing the right thing its not going to be easy but if only there were more people like you
There are also a number of courses being done by local authorities now they will give you a better insight and sign post you to a lot of useful places
She is entitled to DD as well so that can be used for respite in different forms

LightTripper Wed 09-Jan-19 10:20:39

Hi there - I just saw you are in Hackney too. The Ark is brilliant. Although I know you will need to be registered to access the Ark, they do have drop ins where I've never been asked for ID or to prove who I am, I've just turned up. I think if you wanted to meet with the OT or CP maybe you'd need to fill in a form - but just to attend I've not been asked for anything. www.cityandhackneycamhs.org.uk/event/hackney-ark-autism-parents-coffee-morning-2/

There is also a CAMHS monthly coffee morning at Homerton Row with a talk about issues that would be more relevant to older children, and may be useful for you. I can't find a link right now - I'll try to find it later but otherwise you could call them.

If you look on the Hackney Local Offer website there may also be other supports that would be useful.

Also try www.hiphackney.org.uk/home.html (local) and figsuk.org/ (national) - they both have Facebook groups too I think.

Jadems9 Thu 10-Jan-19 19:23:23

Thanks @LightTripper, I had a look at the coffee morning but it hasn’t been updated in a while on their website so I’ll ask them when it is this year! I’ve heard good things about the Ark so hoping to visit and introduce my stepdaughter ASAP.

Thank you everyone for the tips! This week has been her first week back at school and she’s actually doing okay... we spoke to her teachers and they’ve said she seems settled and not very upset about what’s happened. I got in touch with her Senco and she has run me through the support she’s getting from the school and any help we can give at home. I’ve set up the home so she has clear visual cues on what she has to do - chores and schedule on the fridge, homework on a calendar. She even has a little menu hanging in the kitchen that tells her the food planned for the week (and makes sure she’s gonna eat it before I go to the supermarket!). She’s calmed down a lot, there’s been little to no screaming and she’s been very mature this week. It’s been quite nice!

LightTripper Fri 11-Jan-19 11:06:45

They are always slow to update the website. I think I've been sent a letter - I'll try to remember to look up the dates for you and PM you!

There is also another one (I think separate?) run by a parents group called AS1 on the third Friday of each month. It's also held at the Ark. They have a Facebook group which is worth looking up. It explicitly says a diagnosis is not needed to join. www.hackneylocaloffer.co.uk/kb5/hackney/localoffer/service.page?id=EaAXXJOIoTQ
I haven't been to a coffee morning yet as I work full time but the FB group seems nice/supportive.

Glad things are going well this term so far. I'm sure knowing what is happening/when and what is expected of her will help a lot.

LightTripper Fri 11-Jan-19 11:08:53

Here are the dates for the AS1 coffee mornings:
www.facebook.com/photo.php?fbid=10218255962049576&set=gm.2023544707765811&type=3&theater&ifg=1

Jadems9 Fri 11-Jan-19 16:22:21

Thank you @LightTripper. I’ll hopefully make it to the AS1 coffee morning, but all depends on work! I’ve joined the FB group and it looks good, just asked to be part of some buddy system on there to help my stepdaughter socialise more and find some friends hopefully.

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