Emotional maturity in autistic teens

[Punxsutawney]

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.

Same with food - it's no use asking "what do you want for dinner". Either "I was thinking pizza or pasta, which would you prefer" or handing him a food magazine to pick out some meals which we'll do that week work much better. It might be a bit old school now but for people like DS food magazines and cookbooks are an essential, there is far too much choice online, much like the TV planner.

Food choices oh my, yes!. That's just starting to be sorted now as DD is taking an interest in eating healthily. Unless her fatigue's too bad which is more than half the time so she only says 'don't know' or 'don't care'

We reached a huge milestone when she could not only read the allergy labels on all supermarket food but she could decide for herself if something was worth risking or not.

I thought I'd really cracked it when we were going to a lovely restaurant for a treat, we hardly eat out as she has allergies and intolerances but this one place is great for making a few things she can actually eat and we go about twice a year.
I looked on their website, she decided what she'd have, I booked but I didn't think I should have mentioned our food-choice then idiot when we arrived, the dish she'd chosen wasn't available.

The best laid plans

Blank I'm still a little hopeful for the work experience. They did say it would go ahead at some point but told us that back in early March. I was thinking it might happen this year but I didn't realise quite how long we would all be in lockdown for and the impact Covid would have on our lives. The work experience was for year 9, 10 and 11 and Ds being year 11 is at the upper age limit so he might miss out. I think if it did happen now it probably would be next year. Ds has had so few opportunities and although he wasn't particularly enthusiastic about this, I was!

Expletive hope you can rearrange the work experience for your Ds too. I'm impressed about the paper round! Ds won't walk to the post box (about 4 mins away) independently at the moment.

I hear you about too many choices and not being hurried. I'm still learning but trying my best to understand Ds's reaction to certain situations. Blank it's the planning sometimes, like your example of the restaurant. I feel I'm constantly thinking if Ds will be okay and if he will be able to cope. I don't mind doing that at all but it does mean you have to think about everything in advance.

The planning is a constant thing. DD has dietary needs and physical issues too, so forward planning to accommodate her needs has been a thing for me since she was born. We always travel with food and drink in case there's nothing suitable when we get to our destination SIL said the buffet is large there surely will be something she can eat and the rollator is in the boot although she detests using it, it's useful to sit on when she can't walk from the shop to the car in one go. She refuses to have a wheelchair, it's over 10 years since the NHS offered her one.

We've never had a day out in town like other people do, she's never had the stamina, we park as close as possible, visit as many shops as she can manage which isn't usually more than 3 smalish ones, then we come home. If the shop she wants to go to particularly is quite large say like a John Lewis, then that's our entire shopping trip for the day, despite resting in their café a couple of times to recharge. She can't use lifts, she's mentally fogged, jelly legged and totally disoriented for a long time afterwards whenever she's been in one. She's not good at judging when to step on an escalator either, especially the down ones, so that limits her too.

Lockdown now means we can't shop like we used to, i.e. park in a BB space, then shop, then go home.

Now I have to park in a BB or P+C space where DD can see me. Otherwise if she can't see me, she panics. I queue, DD joins me when she can see I'm about 3rd from going in and hangs onto the trolley. She has a sunflower lanyard, so the staff on the door see it and let us in together. She can't judge distances despite there being tape and arrows on the floor so I'm doing a constant commentary of stand in that area, move to this area, go this way keep still, stop, just walk past,

etc.

This is absolutely not helped when she is in a square behind the selfish shoppers who put their trolley in one square and leave it there then dart up and down both sides of the aisle returning to their trolley each time but never moving their trolley until they have finished in that aisle. Grrrr.

I can't see how we can go shopping in a town now as every shop will have a queue, fortunately there's not any pressing need to shop in town, if there is, I'll figure out a way so she can do it.

Reduced hours are a pain now as well. We've been needing to go to the bank for the last fortnight but her fatigue's awful and she's not been able to get up and get there before they've closed. When she's a bit better, we'll go. She doesn't want to bank online or use the cash machine, she likes to ask a person to do her transactions, she feels safer doing that.

I don't think anyone apart from other parents of disabled kids realises the forward planning and strategies and hours of time that go into us being able to keep even a simple appointment.
Several days before, choose outfit and deal with rising anxiety. 2 days in advance wash hair, day before bath and no food that could cause an upset tum "just in case" On the day, deal with panic attacks and anxiety at Defcon1, do not cajole or ask her to hurry when you can see you'll be late as the panic has caused extra loo-trips so more anxiety etc.

Drive there dealing with panic attacks or meltdown, arrive, check in, find loo. Wait to be seen and then the professional concerned cannot see behind the mask DD has by then managed to put firmly in its place.

The planning is exhausting, but it's essential, it never stops, it's part of our life that's invisible to everyone else.

It sounds much harder than we have it Blank. No one in our family has physical disabilities or food allergies/intolerances. However we can't generally do things on the spur of the moment with DS, we never have been able to and eating out can be a problem due to him and DD having virtually no overlap in food tastes. DD likes traditional British pub type food, DS doesn't but he likes Indian, Turkish, Chinese etc which she doesn't. Pubs are a real problem, it is not unusual for us to find there is not a single thing he will eat on the menu. Cafes too, he won't eat jacket potatoes, omelettes, most sandwiches. Usually ends up with a scone. Having said that he has made huge progress in the last few years, takes a great deal of interest in food, tries new things, cooks, bakes, shops (well, he did pre-lockdown). Still won't touch a potato though.

Blank I can see how the fatigue and pain make things even more difficult. Ds has low energy levels but I think that maybe because he eats so little.

I was out this morning and Ds's form tutor rang and spoke to Dh. Ds agreed to speak briefly to him and told him everything was fine, he was happy and that he was getting out everyday. I feel like I'm constantly banging my head against a brick wall. I can barely get Ds to leave the house and yet he always tells people he is fine. I don't know how I can get help for him when he just masks and then we have to pick up the pieces.

It's infuriating, isn't it Punx when you know their situation is so much different to what they tell other people. Sounds as though he's still in denial.
DD would agree with anything anyone asked her or suggested to her if it meant what she saw as "tortuous interrogation" but was to NT people ordinary questions, would stop.

Someone on another thread mentioned the Autistic not Weird blog by Chris Bonnello, I've just linked it for someone else whose lad is in similar circumstances to yours, autisticnotweird.com/just-found-out/ there are 3 brilliant graphics (especially the 'alone' one) on that page and the text is good too.

www.mumsnet.com/Talk/special_needs_teens_and_young_adults/3940943-when-your-child-doesnt-accept-their-diagnosis?msgid=97570010

I don't know how I can get help for him when he just masks and then we have to pick up the pieces
You need to be a lot more of a 'pushy parent'' Punx.
Has he given his consent for you to organise his medical appts, speak on his behalf when he can't etc? Do get that put into place ASAP.

Don't wait for things to go awry so that there are pieces to picked up, get in there first and pre-empt those situations.

You're his parent, can you have an informal discussion with him, go for a drive so it's not face to face, and see about putting some structure into his day, with his co-operation?

What would he like to achieve now he's at home all day?

Would he like to spend time on a hobby? If so, facilitate that.

What would he like to do off-screens?

He is a member of the family and not physically disabled so should do his fair share of household drudgery, allocate him some tasks and if you have to, teach him how to do them, then appreciate his contributions.

If there's a problem, there's nothing wrong in you non-confrontationally outlining the problem briefly then saying 'This isn't working, what can we do to make it better, let me have your suggestions by email/text by date 3 days away or whatever he finds easiest because that lets him be able to communicate without direct face to face contact if that makes it easier, if not, find out what does work and do that.

Blank I've typed up a letter for him to sign regarding the consent. I've not mentioned it to him yet so hopefully he won't say no.

We have had some door slamming from him this afternoon as I asked him why he said he went out everyday. He said that it was because it was the right thing to say. He absolutely knows that if he says everything is fine then there will be no further questioning.

We did have a little more structure at the start of lockdown but that seems to have tailed off due to the refusal to go out. Sadly he has no interests, no hopes or aspirations, just nothing. I've tried to encourage and show him what's out there but he doesn't care. On his SEN plan at school there was a box for short term and long term aspirations. We spent days talking it through with him but he said there was nothing. I told the school this and they said they would leave it blank, so no aspirations at all. He's a bright 16 year old, he should have hopes for the future.

Absolutely yes to the denial, it doesn't help that the paediatrician only saw him once for 5 mins through the whole diagnostic process. I told him about his diagnosis sat on the end of his bed after Dh and I had been alone to the last appointment as Ds wasn't invited. Since then he's still in denial with the blame firmly laid at my feet.

Thanks for the links, I am not naturally a pushy parent but I'm going to have to try. We can't continue like this.

Whenever I get what looks like an insurmountable problem, I look at it a different way.

Split all of the problems into separate sections and treat every one individually.

First of all, take away all the history of the situation, who did and said what previously doesn't make a jot of difference to the situation in front of you. Remove it all.

Second, look at the situation that's right now in front of your eyes, what is that exactly, describe it as best you can.

Third, what are all of the options available to you to resolve the situation?
How much of that can you do on your own right now? Implement that for a start and have a plan in place for any future stages.
Like everything else, you have to push for it to happen.

e.g. He doesn't want to go out.
You realise that's not good for his physical health or his mental health to be in his room all the time.

Up to now you've given him the choice of staying in 24/7.
.
How can you get him to spend some time outside every day? Well, initially not by giving him that choice.

Every one of the following things are pretty ordinary, but they will get him out of his room and into the fresh air.
Tell him, bluntly if needs be, that he's part of the family and he needs to contribute his time and effort in just the same way you and your husband do to keep your home running smoothly.

Do you have a garden?
If so, he needs to be put in charge of the family growing their own fruit and veg or a complete re-landscape project, making raised beds, laying a path, mending or painting the shed and fences, even weeding.

Find something that will occupy him outside physically and mentally for a couple of hours every day. It will build his stamina. He needs fresh air and especially VitaminD from sunshine. As his diet's poor, a multivit with mineral and extra VitD3 would be a good start.

While he's outside, teach him which birds visit if he doesn't know already, if he does, get him to observe their different habits in the garden. Teach him which plants grow in shade or sun, what they are, which ones are edible, which are medicinal, can he create and maintain a herb garden for you?

Can he keep a photographic record of the garden and the work he's doing, the plants and the wildlife in it, write a blog about it, even if it's not for public viewing.

If you don't have a garden, set him on doing exterior house maintenance, cleaning windows, any paintwork need sanding and re-painting? Pressure washing the drive, washing the cars.
Pegging the family's laundry on the line. Growing plants in containers.

Initially, you will have to set each task for him but hopefully he'll become engaged with it and begin to take an interest and suggest things himself.

In a few months, because of his new outdoors routine, he'll be stronger, fitter and healthier without having been pushed right out of his comfort zone.

It's a simple relatively cheap solution, do give it a try.

These are good suggestions. I have been home with the DCs during lockdown and largely that means alone with DS as DD has had a full day of school work every day and DH has had to go to work. I'm a keen gardener and have had DS planting seeds, potting on small plants, planting them out and watering. He's also been pressure washing, chopping logs and has broken up an old wooden bench for firewood. I know its hard to get them started but a tactic that works for me is that I can't manage a task by myself, DH isn't around, DD is working so he has to help (usually involving lifting but sometimes just time constraints as I am working from home part time).

Interesting suggestions Blank and Expletive.

I hope my posts don't come across as too defeatist. I tend to write down my frustrations on here especially if it's all feeling a bit negative. I don't want to make excuses though, I should probably be doing more at home to try and engage Ds.

I have been spending a fair bit of time over the last few days looking at ways I can help him both at home and in his future education.

If I'm entirely honest Punx your posts do sound defeatist in tone but I've been on MN long enough to know that what people post is only a snippet of their reality and it is the perfect place for venting. You obviously care deeply about your DS.

Happy to keep chatting away here if it helps

Thanks for understanding Expletive.

Dropped in a letter of consent to the surgery, they said that it was fine so his records should be updated now. Ds was a little worried about it but I explained it doesn't mean that he can't see the gp alone if he feels that's what he wants. It just allows us to speak and advocate on his behalf without needing his consent every time.

Had a not particularly helpful chat with a LA educational pyschologist yesterday. Trying to not be too negative 😉, so will look again at who might be able to help.

Well done, steps in the right direction. I need to do that with the GP too.

My DS was assessed by the LA EP service before he started school (his nursery referred him) but when I tried to get another assessment in year 5 in preparation for secondary school the school wouldn't refer him, it was one of the things that pushed me into making the EHCP application.

One thing I would suggest if you don't do it already is keeping a notebook with records of all conversations such as the one you had with the EP.

A notebook is good, but only documents your side of things.

A follow-up email to the person you spoke to, confirming the points you discussed and the actions to be taken by them, or their refusal to take action, provides a paper-trail of evidence, because if they don't reply and deny it or change it, then it's seen to be agreed between you and them.

This reminds me, I need to chase up DS's EHCP again. By email.

It is great having an email trail of contact. Dh and look back in amazement at some we have had from the school. Our best one is from the Senco back in year 9 when she told us Ds was not autistic because she'd asked his head of year and he said there were no problems!
It's good to have a record of everything.

Punx since when were school staff qualified to make medical diagnoses?

Ellie it was when we first approached the school with our concerns. She emailed us back and said she had talked to HOY and he was adamant there where no issues or indications of autism. I don't think he even knew Ds's surname at the time. He certainly knew absolutely nothing about autism!

When she finally agreed to refer Ds she gave the forms the Child Development Centre had sent her to the same HOY as she obviously didn't want to fill them in herself. I didn't realise this until the paediatrician showed me at the first appointment. He had pretty much ticked the 'no problem' boxes on all the questions.

He stayed their HOY for the next two years. Not once in that time did he ever contact or communicate with us. Post diagnosis he tried to force food on Ds once and shouted at him because he was too scared to go to a classroom. I have never met a teacher with such a lack of understanding of autism and SEN. He called all the boys in his year 'lads' and Ds did not fit the criteria of the kind of 'lad' he wanted in his year group. He was not inclusive that's for sure.

Bloody school!

Are you any further on with thoughts about 6th form Punx?

We emailed the prospective sixth form this morning, I'm hoping we get a reply this week. Our eldest Ds went there and was happy and did well, so we have a positive experience of the school. It's not a particularly popular sixth form and classes are normally small. We have had a couple of negative comments about moving him as Ds's school is supposedly outstanding but it's been anything but outstanding for him. We just want him better supported.

Ds is not keen and has said he is not moving. I've not made a huge deal about it, just trying gently to persuade him. He is still talking about how difficult he found the transition to secondary and he said he can't face that again. Dh has even tried to bribe him with bits for his computer but he's not responding to that at the moment! He's admitted how unhappy he has been at school, so he doesn't even like it there.

The prospective school don't really know much about him. I've filled in one form where I could give a brief description of his additional needs but that's it. We think he should try and move schools, I really don't know if it's the right place for him but we don't want him going back to his present school.

Expletive is your Ds moving schools?

No, he wants to stay where he is, it's definitely the right decision for him. It's an independent special school. We live in an area where the state schools don't have 6th forms so we have lots of choice of colleges but they are all big and overwhelming. We did go to a lot of open days last year but he really needs to stay where he is.

Sounds like that's completely the right decision for him Expletive.

I wish Ds had been at a good supportive school as It would have meant at least another couple of years before he had to think about moving elsewhere, especially as he hates change.

After 5 years in the wrong place we are keen to get this right for him.

I do think it would be a good idea for you to ask for a meeting/phone call or whatever with the SENCO of the prospective school before the end of this term. Is getting a place there dependent on GCSE results and is that likely to be a problem? Have you considered vocational courses or a mixture with A levels?