Threads

See more results

Topics

Usernames

Mumsnet Logo
Please
or
to access all these features

Emotional maturity in autistic teens
87

Punxsutawney · 10/06/2020 21:16

So Ds is 16 this week and the gap between him and his peers seems to be widening.

I feel that emotionally he's probably around a year 7/8 so around 11/12 age wise. He's not niave and has an understanding of more adult things but does not seem anywhere close to adulthood himself.

He's due to go back to mainstream sixth form in September and I'm concerned about just how different his life seems to others now. I've wrapped up his birthday presents today and he has a cuddly toy and some fidget toys too. He doesn't have any friends, so he is not part of a group or has anyone to talk to or meet up with.

I know every autistic person is different but does anyone with older teens/young adults have any advice on how I can help him make this jump to the sixth form environment? It just feels hard when others are in relationships, going to parties, learning to drive and getting part time jobs and Ds can't even leave the house independently.

OP's posts:
Please
or
to access all these features

Ellie56 · 13/06/2020 13:20

@Punxsutawney I have been watching this post for a couple of days now and see no one has responded yet, probably because in all honesty they have no answers for you.

Punx I'm going to say this very gently, but you're not suddenly going to be able to miraculously help your son, who is clearly struggling intensely, cope with a mainstream sixth form environment alongside neurotypical teenagers, and especially not if they are the same vile, horrible little shits who have been making his life a misery so far.

Your boy needs specialist support and therapy from adults who are properly trained and experienced, and he's not going to get it at that bloody awful school. In fact sending him back there will probably do more harm than good.

Your son is becoming a recluse, shutting himself away in his bedroom, just as our son did 5 years ago, the result of a disastrous experience in mainstream FE, where the staff didn't understand autism, failed to meet his needs, cared even less and expected him to just fit in with everyone else. They nearly broke him.

Somebody advised us to apply for an EHC Needs assessment and that's what we did. As you know, it was very difficult, and took a very long time.

But this is what you need to do. It is no good putting it off and waiting a bit longer to see if things improve. They won't. At least not on their own.

Yes, other families have it worse, but that doesn't mean because they have to contend with Grade 10 shit experiences, does not mean your boy has to continue living with a grade 6 or 7 shit experience. All children are different, but they are all entitled to an appropriate education, to be the best they can be, and achieve the best possible outcomes, and most of all, to be happy and free from anxiety.

From what I can see nothing has changed since you started this thread back in November last year - nearly 7 months ago.
www.mumsnet.com/Talk/special_needs_teens_and_young_adults/3756892-Mental-health-support-for-autistic-teens?pg=1

Read my post on 13th January again. (The last one on page 1)

Everything I said then still stands. Blank Times also gives some sound advice on the same thread.

Just for a start you could look at this website.
They give half an hour's free advice. Contact them.
If you need more advice and assessments they offer payment plans.

www.sunshine-support.org/

Do it. Do it now. Do it for your boy. Flowers

Please
or
to access all these features

BlankTimes · 13/06/2020 13:45

I also didn't want to leap in and reply in case no-one else did.

Punx, I agree with every word Ellie56 has said. Especially this

"Punx I'm going to say this very gently, but you're not suddenly going to be able to miraculously help your son, who is clearly struggling intensely, cope with a mainstream sixth form environment alongside neurotypical teenagers, and especially not if they are the same vile, horrible little shits who have been making his life a misery so far.

Your boy needs specialist support and therapy from adults who are properly trained and experienced, and he's not going to get it at that bloody awful school. In fact sending him back there will probably do more harm than good."

Take him out of that ghastly school.
Get him the help he needs to be nurtured and to grow.

Please
or
to access all these features

Punxsutawney · 13/06/2020 15:44

I started this thread last week when I was thinking about how I could move forward and support Ds, I wasn't sure if I would get any responses. Thank you for your comments Ellie and Blank. I know you are right. 💐

OP's posts:
Please
or
to access all these features

Ellie56 · 13/06/2020 16:28

And yes my son has always been emotionally very immature, although he does seem to have grown up and matured in many ways, having been away at college for 3 years I think a lot of it may be to do with the confidence he has acquired during that time.

He's now 25. Having said that, he still likes his Lego, his transformers and his soft toys.

Please
or
to access all these features

sandwiches77 · 13/06/2020 18:57

OP, I feel your pain. DD is 18 and only diagnosed July last year

Ellie56 and Blank Times help - DD 18 went to mainstream secondary school. Had a horrid time. She was only diagnosed last year so we didn't get the opportunity for alternative provision. She didn't get the GCSEs she needed to stay on at Secondary school for A levels (tbh she was being bullied and school gave no support to her) she moved to local College but struggled with the social side and dropped out after a year. Since then she has been doing online study, but hasn't really kept up with the demands. I have no idea how far behind she is. She was due to sit her A levels this year but obviously that isn't happening. She has now said she will take her exams in the Autumn.... I think having no structure to her day isn't helping but I'm at a loss how to help her plus she wouldnt listen anyway

Please
or
to access all these features

Ellie56 · 13/06/2020 19:56

sandwiches77 DD could apply for an EHC Needs assessment.

www.ipsea.org.uk/ehc-needs-assessments

Just be aware though that you have to be prepared to fight for these things and LAs very often turn you down and then concede when you appeal.

With DD being 18 though she could qualify for Legal Aid if she needs to appeal, which is what happened in our case. (DS had to give permission to the solicitor to deal with me, and I liaised with the solicitor and dealt with all the paperwork on his behalf.)

Please
or
to access all these features

sandwiches77 · 13/06/2020 20:32

Thanks Ellie56 she won't do anything for herself and has a hissy fit if I do anything on her behalf Angry

Please
or
to access all these features

BlankTimes · 14/06/2020 01:32

Hi Sandwiches,All of this is based on things I'vedone for my own DD, so if anything's not a good fit with your DD, please just ignore it. The questions are rhetorical, they are just things for you to ponder, not to reply with unless you'd like to discuss them further.Hopefully I'll have given you some ideas you can adapt specifically for your DD.
I can't help with the education 'how-to's' but Ellie56's advice is spot on.My DD had had enough after trying her GCSE English and Maths again during the first year of 6th form and just missing out again (C?) on the grade you need to continue A levels and she refused to do any FE. She has a load of co-morbids with her ASD and she also has severe fatigue. She'd never been able to do any physical stuff her peers did since being a small child, but it wasn't until she was at home 24/7 that I realised how bad her fatigue really is. 10 years on and we know it goes in phases, but even in good phases, bed, bath, chair days, we call them pyjama days, are commonplace. Depending how physically able and active your DD is will determine her lifepath from here.

Try and encourage a sport that's not based on teamwork, something individuals can do and succeed at theirown pace. Horseriding, archery, shooting, swimming some martial arts all have allowances for various disabilities, there will be loads more too.

Does she have a realistic career path in mind? If so, find out all the alternative ways she could approach getting the qualifications she will need for that, so if one pathway is too demanding, another may suit her better.

If not, and all she can see herself doing is nothing because she feels she's not good enough, why not teach her all the important lifeskills she'll need to function as an adult? In fact, do that anyway because they are too useful not to know.

Don't do this all at once, but gradually do it over time, while she's deciding her future. She'll be learning independence skills, but it won't feel as though she's learning.

she won't do anything for herself Are you sure? That could be an executive function issue, try thinking she can't, (not won't) because she doesn't know how to plan that particular task to get the correct solution. Then see if you can help with 'how to plan a task' YouTube is your friend, but plough through it yourself to find something she'll take on board, if you get her to look for it, she's likely to feel overwhelmed as there's too much info and she can't filter it easily to get the correct info.

This calculator is great for showing young ones how the household income is spent www.stoozing.com/soa.php and provides insight into the things she'll need to know to live independently.

Does she help with shopping, does she inventory the cupboards, fridge and freezer before you go so she knows what's needed and has a list ready?

Could she meal-plan and list the ingredients you'd need for a week?

Is she interested in food, could you both make a special meal every so often to share?

Social communication.
DD watched soaps from primary school age. Corrie and Emmerdale's plotlines were brilliant for teaching about the NT 'unseen but inferred' world which can be invisible to people with autism. A sarcastic comment with tone of voice that didn't mean what the actual words meant. Body language, facial expressions, pitch of voices, someone pretending to be a friend but plotting behind that person's back. Soaps illustrate so much that NT people understand but autistic people don't always pick up on. Watching them together and talking about them afterwards really helped DD to see a lot of the inferred things in the soaps and in reality that previously would have gone right over her head.

Does your DD have a favourite era? Can you get her to do some online research into it, watch videos etc. about it and discuss how different social norms were at that time and compare them to modern-day social behaviour.

How is your DD with phone communication with other people?Can she use the phone with confidence? Is she okay chatting to friends and relatives, can she make an appointment and make a note of date, time, location etc? Can she order goods, request help and explain the situation properly?If not, a few crib-sheets can help if she's flung into the situation, but a bit of pretend practise can teach and also be fun for you both.

How is your DD with face to face communication, conversation etc. Iappreciate now isn't a great time to try any of this, but keep it in mind for when things get more normalised. Can she answer the door if someone knocks/rings the doorbell unexpectedly, can she deal with an unknown caller competently? Can she ask for something in a shop? Can you role-play with her, firstly with you as the other person doingthe correct responses, then you as the other person doing indifferent or contrary or curt or plain daft responses so she's prepared for times when her expectations are not met but she has a plan to fall back on.

Plan B, or more realistically Plans B,C,D,E,F and G is what we worked on loads, a lot of the anxiety that drives autistic behaviour comes from unmet expectations. Life is so much easier if expectations can be more flexible or there are several alternative expectations instead of a single one.

Can you explain how watching the news and a few current affairs programmes can be useful for chit-chat in casual social occasions - again when that re-becomes a part of our life.

Does she have any sensory issues, if so, find out what she feels most comfortable with and what things you can do to make life easier for her. Loads of info herewww.falkirk.gov.uk/services/social-care/disabilities/docs/young-people/Making%20Sense%20of%20Sensory%20Behaviour.pdf?

Don't forget that she may be 18 physically, but emotionally she could be around two thirds of that, so make allowances for that when your automatic response to something she's done is to be exasperated and think she should be able to do that at her age

Ask her if she feels she'd be happier with a structured day and if so what would she like that to be, then both of you work towards implementing it.

Please
or
to access all these features

sandwiches77 · 14/06/2020 08:42

Thank you Blank Times Flowers some really good advice which I very much appreciate. I feel very much alone with a newly diagnosed autistic teenager. I've read the books, been to the parenting group but feel cast aside to cope. When we received the diagnosis, that was it. We've been left to try and figure out how this will affect our DD going forward.

yes I think it is an executive function issue, I welcome an advice on how to navigate this. She has been hell bent on going to Uni which I'm happy to support. But she hasn't completed the steps needed to reach that goal, eg, coursework, exams, UCAS application. Whenever I try to speak to her about this, she says that I don't believe in her and she will complete all the necessary steps. But the still hasn't. Apologies if this is selfish and offends, but for DD Coronavirus has meant that she now has the opportunity to sit her A levels in the Autumn which is what she is now saying she wants to do. In the meantime, she will need support from me to reach that goal.

She is struggling with extreme fatigue, something else I would appreciate advice for as obviously a) won't help her to achieve her goal of going to University b) won't help her with her social anxiety and c) doesn't help her general wellbeing

I welcome any advice on how I can help her to help herself, in the meantime I will take on the YouTube suggestion (any particular YouTuber recommend? I've found Purple Ella and send DD links from her but I don't know if DD watches them) We go through cycles of me trying to talk to DD either directly or via WhatsApp but usually results in DD having a melt down or not talking about it at all to avoid the melt down.

Sorry to OP for hijacking thread

Please
or
to access all these features

Punxsutawney · 14/06/2020 09:04

sandwiches no worries, Blank's post is informative for me too! I hope that it helps you. I know how difficult it can be.

You mention the executive functioning Blank and I know Ds really struggles with that. Well he pretty much struggles with everything you have written. I find with him it's hard to help and encourage some of these things because his mood is low too. He has no enthusiasm for anything.

OP's posts:
Please
or
to access all these features

sandwiches77 · 14/06/2020 09:20

punxs it is so hard. It feels like a never ending viscous circle....

BlankTimes forgot to ask, was the suggestion of YouTube for me, DD or both? If DD how do I a) get her to watch it and b) if she does watch it, take it on board??

Please
or
to access all these features

BlankTimes · 14/06/2020 11:04

We're all cast aside to cope. I spent the first 10 years of DD's life trying to get someone to listen because she was so different to her peers and everyone fobbed me off as she masked so well. It took another 15 years to finally have the ASD dx, but in the meantime she'd been dxd separately with everything that makes up ASD and a lot more besides, both in NHS and private assessments. I was never offered a parenting course or very much information at any stage, we've got to where we are today after a really long hard slog, mostly driven by me.
Along the way we've discovered that some of the people who are supposed to help are fabulous, NHS OT who dxd SPD when she was 10 and a fairly recent NHS physio who discovered DD's hips are out of alignment (why did it take 26 years?) have really made a vast difference and I can't praise them enough.
Others are frankly a disgrace to their profession. I've moaned about that on other threads, but do be aware when you ask for an investigation into any symptoms, some people who should help are very oppositional. Some professionals directly contradict other professionals, one has stated DD categorically does not meet the criteria for one condition, another insisted she does. DD now wants no more hospital appointments or investigations because in her own words, 'They are nasty and they tell lies'

She is fine with our GP but insists I'm there in case she can't explain herself well. We signed forms for that at the GP surgery at her request when she was 16.

Fatigue can have many causes and it needs to be medically investigated as some causes have treatments. We've been in this situation for her lifetime and still no clear answers as to its cause (but even the PIP Assessor saw how bad it was and noted it)

Keep a diary of the fatigue symptoms for a few months whilst you are waiting for a referral to a Consultant to see if it's worse after exercise or strenuous activity or mental effort or socialising or anything else you can find.

See your GP - if she won't let you go with her, see the GP yourself first armed with
How is your DD's co-ordination?
Does she have any joints that are overly bendy?
Has the fatigue appeared since a bout of flu or has she had it all her life?
Look up the Beighton Scores and see if those points are tender on her body.

My antivirus kicks in at 11 and junks anything not saved. Back later!

Please
or
to access all these features

Ellie56 · 14/06/2020 12:31

I absolutely agree with Blank Times . Some so-called professionals are a disgrace to their profession. They don't know as much as they think they do.

We knew our son was autistic from when he was three, but it took me five years of badgering everybody and anybody in health and education, before anybody actually took note.

We had one psychologist tell us that DS "definitely isn't autistic" after one hour's observation. Hmm
An experienced teacher told me there was nothing wrong with our son. He was just naughty/awkward/lazy (whichever adjective took her fancy that day.) DS hated her because she was always shouting at him.Angry

DS was nearly 8 when he was finally diagnosed. But the damage that had already been done by that teacher had be undone by CBT nearly 15 years later. Angry

Please
or
to access all these features

sandwiches77 · 14/06/2020 13:21

It is a disgrace. I raised concerns about DD when she was at Secondary school, I was treated like a neurotic parent and was firmly told she was a "normal teenager" when she didn't get the expected GCSEs school weren't interested in supporting her. Anyway that was 2 years ago now, so need to move on.

Please
or
to access all these features

BlankTimes · 14/06/2020 16:26

Hi Sandwiches and Punx too, hope some of this is useful for you.

Vet the YouTube videos yourself otherwise if she's like my DD she won't be able to isolate the relevant ones from the mediocre ones and she'll miss the point completely.

We go through cycles of me trying to talk to DD either directly or via WhatsApp but usually results in DD having a melt down or not talking about it at all to avoid the melt down

You need to find a better way to communicate in a way that doesn't stress her out. (or place demands on her, read up on PDA techniques)

How does she feel about her diagnosis?
Does she want to shout it from the rooftops and rejoice in her differences, or does she just crave to be like everybody else and hate the fact she's different and knows everyone can also see she's different which makes it even worse for her?

How she feels about herself being autistic will have a huge effect on the way you communicate with her and how receptive she is to different ideas.

Does she feel you're being critical about things she can't help because of her autism?

Do you ask a lot of questions? DD hates that. When she has just got up and I say 'Morning, did you sleep well, which meds do you want first today, what would you like for breakfast?' it's likely to be met with a stare and a grunted 'I'm not awake yet' So I need to space those questions out singly and give her a lot of time to answer each one. Morning, then a pause to see if she's going to the bathroom first or kitchen. If kitchen, then ask about the meds (I have to shake the asthma inhaler and put it in the spacer and press it, her hand co-ordination is too poor for that). I'll pass her a drink of water with no words, wait and then if she's not wandered off to the lounge, I'll ask what she'd like for breakfast and wait for the answer.

It's been trial and error over a lot of years to get this far but simply put, the less stress I give her and the more time I give her between questions, the better she can cope. Also, keep the questions simple, a straightforward choice of 2 things is better than a list of choices presented to her in a rambling way.

Many days when the fatigue is high she has don't know for breakfast and don't care for dinner. On those days I just make the plainest things she likes and give them to her and she can eat them or leave them, it doesn't matter. She can't make them for herself, if she could of course I'd encourage that across the board.

She likes a lot of notice about things, so I'll start a few days before we have to shop for fresh veg by telling her we'll run out of X soon so that means a shopping trip on a certain day at the latest.. We don't ever know 100% if she can make it, but she does try. When that's not an option for her, she just puts her parka on over her pyjamas and sits in the car within sight of me and I do the prescription pickup or nip into the farm shop and be as quick as I can.

You have to find ways that make things work for both of you, use any useful techniques that will calm her anxiety. If I so much as hint about anything that she can perceive as 'get a move on' or show even a twitch of impatience, then that causes the entire world to fall apart instantly, then it takes 5 times as long to get back on track plus we have to deal with a vast panic attack as well.

I've been treated as a neurotic parent for over 25 years, it's vile, but you know yourself that you aren't. The people who accuse you of being neurotic are the ones who cannot understand autism or simply do not want to see autism in their family. Try to ignore them, it's so hard though.

I also find that DD seems to be at her most 'difficult' when I'm struggling to cope with other things and it makes it 10 times harder to see her struggling at that moment too. I've learned that when I'm on the point of snapping saying 'Oh for goodness' sake why don't you just...' that at that second, I need to take a large deep breath, ask her what's wrong, give her a big hug and listen to her needs.

Please
or
to access all these features

sandwiches77 · 15/06/2020 12:04

Hi BlankTimes I've learnt the hard way about asking DD too many questions. She especially dislikes 'how are you' type questions...

I can relate to DD being her most 'difficult' when I'm struggling or stressed. Trying to take a deep breath in these situations, but I still to work on this

Thanks for all your advice, I really appreciate it Flowers

Please
or
to access all these features

ExpletiveDelighted · 15/06/2020 23:25

Hello, this thread has caught my eye because I also have an autistic 16 year old.

Punx - I don't post all that much about my DS now but we have crossed paths on quite a few threads over the last year or so because of our boys' similarities in age and diagnoses. My heart goes out to you, your DS has not been served well by his school, to say the least. Please consider requesting an EHC needs assessment for him, Ellie has articulated exactly what I think too. I went through the process in years 5 and 6 and had a great deal of support from MNers and local friends who I got to know through the NAS. Also the various charities. You can do this, we will be here to support you.

Blank - thank you for all the helpful suggestions for life skills. We have been working at these during lockdown, particularly cooking and associated skills, petcare, household chores and gardening. We also try and watch and learn social skills from TV, it's hard though, slow processing speed makes it hard for h to follow dramas. We watch Gogglebox though, that leads to all sorts of discussions.

Please
or
to access all these features

BlankTimes · 16/06/2020 01:57

ExpletiveDelighted

You're welcome, it's only our own experience, definitely do whatever works best for you and your son.

I completely forgot to say - because it is our ordinary - that DD cannot watch anything on a screen unless it has subtitles on, we even go to the special subtitled cinema daytime screenings.

She says if there are no subtitles, she has to concentrate so hard to try and understand what's happening that she misses most of what's actually going on and can't follow the plot.

Please
or
to access all these features

ExpletiveDelighted · 16/06/2020 07:16

I'm a bit like that Blank, I can follow without subtitles but find it easier with them on. My DD, who is dyslexic, can follow hugely complicated plots and explain them back to you but can't watch with subtitles on as they distract her from the spoken word, with me they supplement it. I always read the plot synopsis online before going to the cinema or theatre too, otherwise I struggle a bit to follow it, she doesn't need to.

With DS its not just the keeping up, he's just never been that interested in dramas, similarly with books, he has a strong preference for non-fiction and has fairly rigid interests (sport and history). This is where Gogglebox is good as it shows small snippets of dramas which catch your interest. There is also plenty of discussion to be had around body language, figures of speech used by the viewing families etc.

Please
or
to access all these features

Punxsutawney · 16/06/2020 19:16

Expletive thank you for your encouragement. I do remember reading some of your posts on other threads. It does really help knowing others understand the situation and can share their own experiences and helpful advice. I hope you can continue on with the life skills during this period. Ds doesn't watch TV, he did used to watch documentaries about space and science etc but he doesn't seem to have the concentration for them anymore. There is two comedies that he likes but we watched one episode a night during the first weeks of lockdown and ran out a few weeks ago, he's not willing to watch anything else.

Blank and Sandwiches yes to lots of the things you mention. Ds can't be hurried in any way, if I do that makes things so much worse. And as far as asking him questions, if I ask at the wrong time then he gets very upset. I never know what to say when and always seem to say the wrong thing at the wrong time. That is definitely associated with his ASD but I think him being a teenage boy exacerbates the situation.

It's unfortunate as Ds had an opportunity in April to do some work experience supported by staff from the National Autistic Society at a local employer who has a very good track record of employing those that are neurodiverse. Covid put a stop to that and it was for specific year groups so I'm not sure the opportunity will be there again. He wasn't particularly looking forward to and I actually think I might have struggled to get him there it but I thought it might just give him a glimpse of something else outside of his own very isolated life.

OP's posts:
Please
or
to access all these features

ExpletiveDelighted · 16/06/2020 21:38

My DS had a week of work experience lined up next week too, the employer had a really hard think about it but had to say no because of social distancing, it would be impossible for them to show him what to do etc. He has a paper round on Saturdays though which is something, the papers are dropped off at our door, he doesn't have to go to the shop for them.

Please
or
to access all these features

BlankTimes · 16/06/2020 22:13

Ds had an opportunity in April to do some work experience supported by staff from the National Autistic Society at a local employer who has a very good track record of employing those that are neurodiverse

I'd be like a terrier with a bone with that and would contact all concerned, really letting them know what a wonderful opportunity it would be for your DS and asking how they could facilitate it now and if not now, then when?
Make it happen Punx!

Please
or
to access all these features

ExpletiveDelighted · 17/06/2020 10:25

Yes, we are going to follow up on DS's work experience again if and when social distancing is relaxed.

Please
or
to access all these features

ExpletiveDelighted · 17/06/2020 10:33

Just coming back to the TV thing, we have Sky, so millions of channels. DS hasn't got any particular favourite shows at the moment and if you hand him the control and say "you choose" he just can't, it overwhelms him and he flicks through the planner getting stressed out. However I can usually find something that he'll watch, he likes You've been Framed and similar, cookery and travel, those shows that count down "all time most cringey talent show moments" or whatever. He definitely needs the prompting from someone else though.

Please
or
to access all these features

BlankTimes · 17/06/2020 13:20

Making choices for anything when there's a large selection available can be overwhelming for DD,, I usually narrow the selection down to two or three if that's possible, definitely prompting needed with absolutely no insinuation of 'please hurry up' Wink

Please
or
to access all these features
Please create an account

To comment on this thread you need to create a Mumsnet account.