Help for 16yo with ASD

[2girlsandagap]

Posted in SN chat also
Dd 16 has mild autism (diagnosed officially) and had her first day at college yesterday- absolute disaster. She’s come home hysterical that it was too disorganised and too much going on for her to cope with. She’s now refusing to go back. I spoke to the SEN team at the college today and they were, to be frank, utterly useless.
I don’t know where to go for help- I know she has to do something education wise but she’s refusing college and imo she not at the level where she could do an apprenticeship. She struggles with social situations, crowds and new experiences. She needs to be told step by step instructions for anything she’s not done before and isn’t great with taking the initiative.
I’ve tried to discuss what subject or course interests her but she isn’t interested in anything really- she doesn’t have hobbies and doesn’t like to go out and socialise.
I don’t mind what she does course wise- I just want her to be happy and not so isolated. To my mind what she’s doing now (staying in her room 24/7) isn’t living it’s existing. I don’t know how to support her or access help.
The diagnosis was made about 6 months ago after many years of seeking help but since we’ve had no support or information how to best help her flourish. Camhs discharged her at 16 and mind matters won’t accept me applying for her- she’s incapable of doing it herself as phone conversation sets her off.
Can anyone advise me?

[BlankTimes]

She struggles with social situations, crowds and new experiences. She needs to be told step by step instructions for anything she’s not done before and isn’t great with taking the initiative
Generalising here, this is where a LOT of FE falls down for autistic kids, they are expected to go to their support and tell them what's causing them difficulties and ask how to get around that, which no doubt an NT kid of that age could do, but for my autistic dd at that age, it was a step too far. She couldn't identify what she needed help with, so that didn't work for her.

I'm so sorry you've been told she has 'mild' autism. as you can see when she is faced with dealing with a change, her autism is far from 'mild' To obtain an autism diagnosis, she needs to have " “persistent difficulties with social communication and social interaction” and “restricted and repetitive patterns of behaviours, activities or interests” (this includes sensory behaviour), present since early childhood, to the extent that these “limit and impair everyday functioning”. Source www.autism.org.uk/about/diagnosis/criteria-changes.aspx

There's also a good explanation of 'mild autism' here theaspergian.com/2019/05/04/its-a-spectrum-doesnt-mean-what-you-think/
"My doctor recently referred to my autism is “mild.” I gently pointed to my psychologist’s report which stated that my executive dysfunction as being greater than 99th percentile.
“That means I am less functional than 99% of people. Does that seem mild to you?” I asked her. But, you see, I can speak, and I can look people in the eyes, so they see my autism as “mild.” My autism affects those around me mildly but my autism does affect me severely."

Right now, I'd let her proces her experience until she feels able to try doing something different. Do remember that emotionally she's likely to be only two thirds of her chronological age, so do alter your expectations about what she should and shouldn't be able to cope with 'at her age'

Have you applied for PIP for her? If she's getting DLA, then the transfer will be activated when she's on their list, no need to apply now to change.

Is there a Carer's group in your area? Your local Council should have details, contact them and ask if they have any advice, they may well be able to give you contact details of an Autism support organisation near you, ask if there's anything for teens.

Are you on facebook? I'm not but have heard posters here say there are a lot of support groups on there, so you could look for any in your local area.

When she's fully got over that experience which could likely be months not weeks, could she study using Interhigh if she finds anything of theirs interesting? Lots of parents whose kids can't survive in mainstream have posted on here about it, so it's worth bearing in mind for the future. interhigh.co.uk/

[2girlsandagap]

Thank you so much- that’s exactly the information I have been looking for! It’s just so hard especially when I have no experience with special needs and quite honestly took her behaviour to be normal for her as she coped fairly well until high school

[BlankTimes]

You're very welcome

I've just remembered there's something called Local Offer on everyone's local council website, do try looking at that that and see if it gives you any helpful links as well.

It’s just so hard especially when I have no experience with special needs and quite honestly took her behaviour to be normal for her as she coped fairly well until high school

This is very typical for the presentation of autism in girls. They are okay until a certain point, then it becomes evident and everyone's in a spin because they don't know what's going on and all the usual methods of help if they are available tend not to be very successful, because they are based on treating NT kids, e.g. counselling. How can talking be helpful for someone with a severe communication disorder, yet often that's the only thing offered. Some women aren't dxd until uni, some not until they've "failed" in several workplaces, and some well into middle age.

Please look online and read everything you can about autism in women and girls. Here's a few links to get you started, but please search as well.
thegirlwiththecurlyhair.co.uk/
taniaannmarshall.wordpress.com/
Look on youTube, Purple Ella is very popular, there's loads about autism in women on there, I'm sure some other posters will be along with more suggestions soon.

Always remember, every person with autism is a person with autism, there's no standard "all autistic people tdo xyz" list of things you can expect your dd to be able or unable to do. she is unique, and in helping her to navigate the NT world, you can identify her strengths and weaknesses and help her to cope when she's overwhelmed.

You may not know much about sensory stuff, here's a guide
//www.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?v=201507131117

[MMMMMaria]

Hi I’m going thru a similar issue in that 17yr old has just (July) been diagnosed with ASD. She failed her mock A levels as we’ve found out she has poor executive function skills. I’ve applied for an EHCP but have been told it’s difficult as the govt threshold is GCSEs and once they have those there isn’t much concern on helping them achieve more.
Countact the GP and the council and see how you can be named the guardian/point of contact as she isn’t rally able to do that yet. My DD told the GP she didn’t want to get the calls etc and that she wanted me to be the point of contact. The GP was happy to comply. I added a line at the end of my EHCP application where it says something similar and my DD signed it. Council is now contacting me for everything.
Can you call Minds Matter together and have her say to them on the phone that she wants to act on her behalf? Sounds like the you need to to get CAMHS back on board. It’s shocking how children get dropped at 16. Did she get an EHCP following diagnosis? If not you could apply now.
My council has an independent org that works with families as an advocate to help them get the help they need. The National Autistic Society also has area family coordinators that can help. Would it help if you wrote to the school head saying that your child has X needs/diagnosis and the school hasn’t done anything to accommodate this so can you meet to discuss a way forward. Sometimes having a designated room when your child can go to when things are overwhelming is enough. If they have a card they can show the teacher that gives them permission to leave a room whenever they need to so they can calm down in the designated room before going back to classes.
Hope that helps. It’s so hard when you don’t know which way to turn!

[2girlsandagap]

She’s had to withdraw from college- it was just too much for her and the support available in her college was sadly lacking. Triggered a huge breakdown in her mental state.
I’m currently trying to complete the application for an EHCP- it’s hard going. The doctor has suggested online education so I’ll need to try and find some funding for that as well. I’m shocked at how poorly informed some of the professionals are with regards to what’s available post-16 for teens that struggle. Luckily she is now under a really good MH team and they have offered to support with providing evidence to the LA etc.

[MMMMMaria]

So glad to hear she’s under the care of a good MH team!
Sorry for delays in posting but I can’t figure out how to get alerts when someone has posted a new comment 🤦🏽‍♀️
Yes it’s shocking how little support there is post 16yrs. A friend’s DD has just come home from uni because she went too early, friends weren’t around as much as she thought they would be so spent most of the time alone and ended up spend 3 days in bed crying and not leaving. Home now for some rebuilding by her mum. It is quite difficult for many children so ones with SEN really need support.

[Ellie56]

I’ve applied for an EHCP but have been told it’s difficult as the govt threshold is GCSEs and once they have those there isn’t much concern on helping them achieve more.

@MMMMMaria you are being fobbed off. EHCPs potentially go up to age 25. If your daughter is capable of achieving A levels then she needs to be supported to do so.

[2girlsandagap]

@MMMMMaria I got told that too- keep on at them. If they continue to fob you off then complain to the LEA. If you ever want a fellow aspie parent to sound off against feel free to message me

[MMMMMaria]

Thanks for that 2girls will save your name for when I need to sound off and Ellie56 I won’t let them fob me off. My concern is how to get an EHPC that gets my DD into a 6th form with small classes. The one she’s in is very good but is a London school with A level classes of 12-18 students which is too much for her. Think I’ll get an EHCP but probably only for extra help for learning social communications and executive function skills. Will have to wait as have the panel review of the EHCP request at the end of the month.

[Ali59]

My son hsa Adhd and Odd, he has just been awarded PIP with high rate care and high rate mobility. He would not allow me to be his appointee as he thinks he manages his money but doesn't. He was spending 4weeks dla on the day he got it, mostly on canabis. I know he will do the same with his PIP and then expect me to pay for everything. How can I get him support to manage his money, my worry is he will start taking stronger drugs egged on by the undesirables he hangs round with.