Parents of neurodivergent teenagers

Stuckinthemiddle2003 · 2023-01-02T21:03:17+00:00

To expect support financially and physically... Dd is nearly 20 and has adhd/autism and I'm feeling stuck with what to do. She has always been quiet, has no 'real' friends (lots online) and she very rarely goes out other than with me or dh. She lies all the time even to our faces. She attended college just before Covid happened so most of it was online and she hasn't done anything since, and lied her way through most of it, things like telling tutors we have no Internet when the only reason she hadn't submitted work is because she'd procrastinated. She spends her days in her room which is a mess, sleeping in and staying up late. I have tried to talk to her many times but she just cries and before now has even said 'I didn't ask to be born.' She also seems to have high levels of anxiety. She will reluctantly empty the dishwasher once a day (extremely slowly) and will leave anything with even the tiniest bit of food/mark on. She doesn't do anything else and if I ask her to do something, she takes ages (like hours) and usually does it poorly. I suggested she should contact the job centre in the hope they'd offer guidance/support in moving her life along as I am at a loss but they are doing nothing but she now has a monthly income for doing sweet FA. Again, I am unsure how much bullsh@t she is telling them. She gets a bus to appointments but will happily want a lift if she can get away with it. This is the only time she leaves the house without a parent. Myself and dh both work full-time and I have a health condition. We also have a younger child (12) She is very educated but opiniated and regularly clashes with dh although silently, they just avoid each other mostly but I feel stuck in the middle constantly trying to keep the peace, consider dd's mental health and improve things plus trying to keep myself well. Honestly, it's hell but it's also impossible to work out whether it's just pure laziness or the adhd/autism and where to go next, she is so fragile. Should I expect more from her? Financially and physically? Any suggestions? Please be gentle

ditherydotty · 02/01/2023 21:29

I had to reply, sadly not with advise, as your post resonated so strongly with how much this could be me in 10 years with my own dd (asd and I believe pda although they don't diagnose pda where I am). My dd is only 10 but acts the same as you've explained your dd is. Especially the "why did you born me"

It's so difficult, I expect now she's 20 and classed as an adult the support is limited. The job centre staff could refer her to a program that may help (depends on your area). Personally I would be taking some form of financial contribution but I'd likely put it away for her future. Also a rota for family chores so she knows what's expected?
Sorry can be much help

secondaryquandries · 02/01/2023 21:35

Have you spoken to her about what she'd like to do/her goals?

PinkBuffalo · 02/01/2023 21:43

I really feel for you and you daughter OP
i am autism and it does make life REALLY hard for me. I am currently not coping in my job at all despite all the reasonable adjustments and I cannot even really work out what is wrong (I am not clever!) but I been there looong time so trying to stick it out best I can cos I got bills to pay

when i was worry I was going to lose my job earlier this year (long story!) I went to the job centre with a friend to ask them what would happen. Last time I was unemployed 15 years ago it was awful cos I am basically unemployable on paper and interview and the job centre as no help at all.

The lady we speak to there was actually kind (I was crying) and tell me if it does happen then things are very different now and they would have special advisors for me and courses I could go on to help me.

I have no idea how true this is or if she was just trying to calm me down but might be worth you daughter asking them for some extra support?

winningeasy · 02/01/2023 21:44

Gosh that sounds tough. What about applying for university? Has she got any idea what she wants to do longer term? A careers counsellor or coach could help perhaps

My brother - also ASD - was a bit like this at 20. He joined the navy and it really sorted him out. Not saying she should do that but I do think jumping in the deep end could be good.

I left home at 17/18 and went straight uni and was absolutely clueless how to look after myself, made a tonne of mistakes personally, but the halls where I stayed fed me and it was close to the campus so I was able to learn how 'adult' fairly gently.

Punxsutawney · 02/01/2023 21:50

Did she previously have an EHCP at school or college?
EHCP's can go through to 25, so she could attend a placement and also get any therapies that she needed as part of the package.

DS is 18, autistic, has an EHCP and attends a specialist college. Without this, he would very rarely leave our home. He maybe an adult, but has some complex difficulties and currently still needs a considerable amount of support.

marmitegirl01 · 02/01/2023 21:50

Just here to say you are not the only one. Mines 19. Not done anything since school. On UC. Paralysed by fear of doing anything. Goes out with friends sometimes, doesn’t get anxious then 🤷‍♀️
no drive to do anything. I don’t see how situation will change. Just causes arguments if I challenge her. Does dishwasher same as your s! She does give me some UC towards housekeeping.
I have the age 24 in my head to ask her to leave if situation doesn’t change 🤷‍♀️

Smashedavacado · 02/01/2023 21:54

I am sorry to hear the difficulty that your family is having. Do you know if your daughter has had any support from the Disability Employment Advisor at the Job Centre? This would be in addition to her Job Coach. Through my work (including with young people with autism) I have found the DEAs at an excellent help. Your daughter would have needed to declare her autism/ADHD on her initial claim (UC I assume) but it's not too late to do so. Whilst you may feel she should be independent would she let you go with her? This is not uncommon.
Also it may be worth looking for organisations that support young people with autism. Would your daughter for example be willing to socialise with other neuro diverse young people? The DEA in our area are great at referring people to non work activities such as social activities & volunteering. It is widely accepted that for someone struggling with anxiety & going out of the house there are many steps before paid employment is a realistic option. Sending off multiple job applications is no longer necessarily the only answer.

Mediumred · 02/01/2023 22:03

Goodness, that sounds so hard and no wonder you are so worried and so unsure how to proceed. I have a younger ASD teen and the situation you outline is something I really fear, as other posters have said.

does she have any interests at all that she might like to pursue with another course or volunteering, eg second hand clothes/books or records, gardening, animals, art, music? There do seem more opportunities for young autistic people opening up (friend’s girl did an internship for an autistic youngster at the Treasury! But appreciate this probably wouldn’t suit everyone). This company seems to offer opportunities (who doesn’t like chocolate???) I only saw it as it was recommended on a thread about ethical Xmas pressies but other posters might have other ideas.

www.harryschocs.co.uk/pages/our-social-cause

and please look after yourself too, you sound like you are doing all you can to support her under very trying circumstances so please try to be kind to yourself.

Original poster

Stuckinthemiddle2003 · 02/01/2023 22:03

Before I reply, just wanted to say thankyou for your replies. I feel so stuck and it means a lot to have meaningful responses and kindness 😍

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Original poster

Stuckinthemiddle2003 · 02/01/2023 22:09

ditherydotty · 02/01/2023 21:29

I had to reply, sadly not with advise, as your post resonated so strongly with how much this could be me in 10 years with my own dd (asd and I believe pda although they don't diagnose pda where I am). My dd is only 10 but acts the same as you've explained your dd is. Especially the "why did you born me"

It's so difficult, I expect now she's 20 and classed as an adult the support is limited. The job centre staff could refer her to a program that may help (depends on your area). Personally I would be taking some form of financial contribution but I'd likely put it away for her future. Also a rota for family chores so she knows what's expected?
Sorry can be much help

Yes I definitely hear what you're saying, it's not only that she is an adult to services but that she is an adult in life so she is free to choose how to live her life and I don't have much say in it 🤷🏼‍♀️
Chores rota sounds good although her attitude is that its our choice to do things not hers so up to us to facilitate. Obviously she misses the fact that these things keep the home running that she lives in and food on the table

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Pixiedust1234 · 02/01/2023 22:10

I have no idea about autism so don't know if the signs are the same but your post is screaming depression at me. Has she been to the GP about the possibility of it?

Definitely give her chores to do, even if its only a couple of jobs every day. Maybe washing up and hoovering, which are very basic but necessary (hoovering is physical which the brain decides as exercise/running highs).

IdisagreeMrHochhauser · 02/01/2023 22:17

The percentage of autistic adults in employment is tiny. The dishwasher will be a sensory issue. Teach her that if she wears gloves she can touch things with food on.

There is no real support for autistic adults - are there any charities or groups locally? Most of us socialise online as that's the best place to find other people like us. Job centres have very little understanding of neurodivergence but they should have a disability advisor and they might offer basic courses in things like interviews and writing CVs.

Original poster

Stuckinthemiddle2003 · 02/01/2023 22:21

secondaryquandries · 02/01/2023 21:35

Have you spoken to her about what she'd like to do/her goals?

Yes
Says she doesn't know
Alevels in geography, history and English

But basically she wants to do gaming/ tech stuff but I'm concerned it's much easier for her to stay in her room especially now she is getting UC for less than 20mins of effort a month!

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Onnabugeisha · 02/01/2023 22:23

I second the possibility she is suffering from depression. People with ASD or ADHD are at higher risk of depression, and she has both. Also, has she been assessed for ADHD medication at all? It not going to do any good for her to try and be organised, to try and focus, to try and not procrastinate if she’s not being helped with tools and medication for the ADHD.

She may be lying from a sense of shame about her disabilities as well. It sounds like her self confidence is at rock bottom.

Onnabugeisha · 02/01/2023 22:25

Stuckinthemiddle2003 · 02/01/2023 22:21

Yes
Says she doesn't know
Alevels in geography, history and English

But basically she wants to do gaming/ tech stuff but I'm concerned it's much easier for her to stay in her room especially now she is getting UC for less than 20mins of effort a month!

Show quote history

Those are the wrong A levels to do tech/software/game design.
Could that be part of the issue? Might have to pay for her to get a BTEC if you want to help her pursue what she really wants to do.

Original poster

Stuckinthemiddle2003 · 02/01/2023 22:26

PinkBuffalo · 02/01/2023 21:43

I really feel for you and you daughter OP
i am autism and it does make life REALLY hard for me. I am currently not coping in my job at all despite all the reasonable adjustments and I cannot even really work out what is wrong (I am not clever!) but I been there looong time so trying to stick it out best I can cos I got bills to pay

when i was worry I was going to lose my job earlier this year (long story!) I went to the job centre with a friend to ask them what would happen. Last time I was unemployed 15 years ago it was awful cos I am basically unemployable on paper and interview and the job centre as no help at all.

The lady we speak to there was actually kind (I was crying) and tell me if it does happen then things are very different now and they would have special advisors for me and courses I could go on to help me.

I have no idea how true this is or if she was just trying to calm me down but might be worth you daughter asking them for some extra support?

Thanks for the insight, it's good to hear from someone who lives it. Sorry you're struggling too.

What you have said resonates with my experience with my daughter and I try to make allowances but I'm not sure she's not taking advantage

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Original poster

Stuckinthemiddle2003 · 02/01/2023 22:31

winningeasy · 02/01/2023 21:44

Gosh that sounds tough. What about applying for university? Has she got any idea what she wants to do longer term? A careers counsellor or coach could help perhaps

My brother - also ASD - was a bit like this at 20. He joined the navy and it really sorted him out. Not saying she should do that but I do think jumping in the deep end could be good.

I left home at 17/18 and went straight uni and was absolutely clueless how to look after myself, made a tonne of mistakes personally, but the halls where I stayed fed me and it was close to the campus so I was able to learn how 'adult' fairly gently.

She's not sure if she wants to go to university and I'm not sure she would survive it. We went to the local college who basically said she's an adult and can only do something like creative writing or photography type short courses say 12 weeks
I left home at 17, no life skills but lots of umpf and determination and taught myself but she has no drive or passion for life

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ExtraOnions · 02/01/2023 22:33

Mine is 16 .. will be 17 in June.

Mot currently at college, she did manage to get 5 GCSEs, but decided she wanted a year out to decide what she wants to do. She has this worry that she will choose to do the wrong thing, and then will be stuck doing that forever (despite me telling her that you can always change).

She got a temp Christmas Job at local retail park - and stunned us all by sticking at that.

What’s made a huge difference to us is there she is now seeing a therapist, I think it’s CBT (but I don’t pry), which is really really helping her.

I also try to step into her gaming world, as that’s the best time to talk to her. I think she’s likely to go back to college in September, and wants to do some E-Sports course … sounds interesting.

I really try to push autonomy with her, if that’s the course she wants to do, and that’s what she does - one thing I got back from her therapist was that I was too controlling (fair comment)… so now I am much more hands off.

DolphinWars · 02/01/2023 22:33

Have you ever heard of Prince’s Trust?
They run programs for struggling young adults to help to meet people and learn interesting things.

A friend of mine’s son finished sixth form and ended up depressed. He has ASD/Adhd - Prince’s Trust really changed his life.

In my area it was closed down but a local college took it over so there is still provision, so it’s worth finding out if there’s anything similar in your area.

DolphinWars · 02/01/2023 22:34

Forgot to add the link 🙄

www.princes-trust.org.uk

Original poster

Stuckinthemiddle2003 · 02/01/2023 22:38

Punxsutawney · 02/01/2023 21:50

Did she previously have an EHCP at school or college?
EHCP's can go through to 25, so she could attend a placement and also get any therapies that she needed as part of the package.

DS is 18, autistic, has an EHCP and attends a specialist college. Without this, he would very rarely leave our home. He maybe an adult, but has some complex difficulties and currently still needs a considerable amount of support.

No EHCP, it was completely missed in school (and college tbf) so she is undiagnosed but 99% certain she has adhd (I do too and 12 yo) and about 85% certain she is autistic.
She also doesn't want a label.

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Original poster

Stuckinthemiddle2003 · 02/01/2023 22:45

marmitegirl01 · 02/01/2023 21:50

Just here to say you are not the only one. Mines 19. Not done anything since school. On UC. Paralysed by fear of doing anything. Goes out with friends sometimes, doesn’t get anxious then 🤷‍♀️
no drive to do anything. I don’t see how situation will change. Just causes arguments if I challenge her. Does dishwasher same as your s! She does give me some UC towards housekeeping.
I have the age 24 in my head to ask her to leave if situation doesn’t change 🤷‍♀️

Thanks yes very similar then, I feel she has virtual friends so life can look however she tells it and it's safe.
Can I ask how much housekeep you ask for? Or percentage of, if you'd prefer?
I feel she thinks I just want the money.
Forgot to add, UC results in me signing for multiple parcels when I am trying to work all of which are game related 🙄

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Onnabugeisha · 02/01/2023 22:49

I left home at 17, no life skills but lots of umpf and determination and taught myself but she has no drive or passion for life

You need to stop comparing her to you. You don’t have ADHD and ASD. It’s kind of depressing that you don’t understand that you can have all the determination, drive or passion in the world, but still get nowhere with these disabilities. It’s not a mind over matter type of situation. It’s even sadder she has no EHCP and therefore probably not the full accommodations and tools she needs just to level the playing field to to you at 17.

FlamingJingleBells · 02/01/2023 22:51

Ambitious About Autism has an employment advice section and offer paid internships with companies. Worth getting in touch with them to see what they advise.

www.ambitiousaboutautism.org.uk/what-we-do/employment/paid-work-experience

Original poster

Stuckinthemiddle2003 · 02/01/2023 22:52

Smashedavacado · 02/01/2023 21:54

I am sorry to hear the difficulty that your family is having. Do you know if your daughter has had any support from the Disability Employment Advisor at the Job Centre? This would be in addition to her Job Coach. Through my work (including with young people with autism) I have found the DEAs at an excellent help. Your daughter would have needed to declare her autism/ADHD on her initial claim (UC I assume) but it's not too late to do so. Whilst you may feel she should be independent would she let you go with her? This is not uncommon.
Also it may be worth looking for organisations that support young people with autism. Would your daughter for example be willing to socialise with other neuro diverse young people? The DEA in our area are great at referring people to non work activities such as social activities & volunteering. It is widely accepted that for someone struggling with anxiety & going out of the house there are many steps before paid employment is a realistic option. Sending off multiple job applications is no longer necessarily the only answer.

No DEA as far as I know, she spends less than 5 mins a week in there. I was wondering whether I could ho either her but thought they might say I'm not allowed in. I don't think she would have said about her adhd unless it's to her advantage as she doesn't want to be labelled.
I've tried her accessing peer support but she won't go or come with me
It definitely feels as though she needs an interim before work so I'll definitely encourage her to ask/let me go
Thankyou

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