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.

You could be right about him being able to scupper the needs assessment now he is over 16, you would need proper advice on that. On the other hand you have parental responsibility till he's 18 so your views count too. If as part of the assessment it can be seen that the reason he is so disengaged is the awful treatment at his last school then there is grounds for saying that he needs therapy in order to re-engage with education and work. The criteria for a needs assessment are that the person has or may have SENs (he obviously does and you have his diagnosis and other evidence that this is the case) and that they MAY need special educational provision through an EHCP.

It's good that the SENCO has offered to meet you in September, you can always keep that as a possibility, however it does sound likely that he would reject their support for fear of being different. If I were you I'd be getting in touch with the specialist college now before term ends to see exactly what they could offer, they may have experience with disengaged students (at my son's school this is very much the case). You really need to get DS onside with any plans, his views do count, so maybe start looking at the college online with him over the summer.

Thanks Easily. I'm worried about him getting to 18 and things not changing and then we would have a young adult who refuses to engage with anything and also no longer have parental responsibility.

He can't seem to understand his difficulties very well. I have sat in appointments and he has denied all knowledge of something I have been talking about. At his speech and language assessment the therapist would not talk to me alone even though Ds gave his consent. He ended up telling the therapist that I was lying about some of his difficulties when I was trying to explain things to her. As yet (to my knowledge) no professionals have ever questioned what I've said. It was obvious from what the SALT wrote in her report he was going to get a diagnosis.

He's knows that if he says everything is fine and he is okay then he will be left alone. I've had him get in the car after school this academic year and go into meltdown straight away, hitting himself and shouting and yet no one in school would have realised (or even cared) how bad he was feeling.

We do need to start the conversation with him about all options. I can't see any decisions being made quickly though, I think it will probably be a slow process. I wonder if the specialist college would talk to us as Ds doesn't have an EHCP?

I forgot to mention I had NC'd by the way.

Only one way to find out with the college, give them a ring, ask for admissions.

I have to say I can't advise much from experience of a DC not engaging as mine has so far and was diagnosed younger. What I would say is keep a written record of events such as that you describe of lying to professionals, meltdowns in cars etc.

I have a friend whose DS had an EHCP right through school and college and who has disengaged at age 20 so it can happen at any stage to any of us. But obviously the further through life and education you can get them the better. I know there is not much happening anywhere with Covid but are there any youth centres or similar in your area? There is one here, it has been a great help to a friend's DD who suffers with extreme anxiety. The advantages of these services are that you don't need to have an EHCP although some sort of referral might be needed.

Thanks for replying Easily, I did notice the NC. It is really useful hearing about others experiences. I've learnt so much from the posters on MN.

Will have a look at youth centres and what they offer although Ds was not keen on the lovely group I had found.

There is certainly plenty to be thinking about. I'm not sure we are thinking about much else at the moment...

Punx

In the case of a young person (over 16 and up to 25), they can make the request themselves. If the young person is not able to understand, remember or communicate decisions about the educational support they need, their parent or carer can make the request on a young person’s behalf.

www.ipsea.org.uk/asking-for-an-ehc-needs-assessment

There is more information about how the law applies to young people here.
www.ipsea.org.uk/Pages/Category/young-people-aged-16-25

Our DS was 19 when someone advised us to apply for an EHCNA. I applied on his behalf and someone else helped DS to fill out his views.

Have you contacted Social Services and asked for a Child in Need assessment?

Ellie that's interesting thanks. Well Ds can communicate verbally but he can't or won't communicate his needs because he says there are none. The only time he has ever admitted that he would like help is when we tried to get the CAMHS referral last year, unfortunately I couldn't even get that right for him.

Reading the ipsea info it looks like it will be his decision as he has mental capacity. Will they even accept documentation filled in by us?

I'm now concerned that we may not be able to go down this route at all if he says no.

I've not looked at the SS assessment yet.

I'm not quite sure of the legal ins and outs, but feel that if you apply, with his diagnosis and your evidence of the ill treatment that he has had at school leading to his disengagement, other evidence of lack of maturity, you say he can't leave the house on his own etc then that should hold some water. I think at this point you need to consult one of the SEN charities or an advocate in the field of SEN law.

Punx Could you present it as something that has to be done because he can't sit in his bedroom for ever but you will do the actual application for him?

When my DS didn't want to do things (that he simply had to do) I gave him a choice of the thing I wanted him to do or something he would like even less.

I think to be honest the likelihood of any 16 year old being switched on enough to navigate the EHCP system is extremely small, the provision is there for them to do so but in virtually all cases it will be the parents or carers behind it with the young person's signature being a bit of a formality. You jneed to get over that first hurdle of getting the local authority to assess. However as they are always looking to save money if the YP says they don't need help that plays into their hands. Can you sell it to him along the lines of "you aren't going to sit in your room forever and this will help us to find the best best way forward". I do get it to some extent, I have anxious phases when I would like nothing better than to stay asleep all day but the reality is that shutting yourself away makes things worse not better.

I like your idea Ellie, that I need to give him a couple of choices and he picks the one that is the least worse!

I need to talk to him about shutting himself away. He can't live like this forever. I know he's anxious and unhappy and feels safe in his room but it is making everything harder.

Looking at the info on ipsea Ds became a young person in the eyes of the law last Friday. I wish we had pursued this In January when we were first looking at it but as per normal the Senco put us off.

I understand the need for Ds's consent and the need for him to engage but it's frustrating that if he says no then our voices may not be heard. Easily I can't believe that many 16 year olds could navigate the EHCP process.

We will carry on at the moment. I've got plenty to write on the form and documentation to send and it is a huge hurdle even getting them to agree to assess anyway.

We have had another email from the prospective school today. It was from the teacher that will be Ds's form tutor if he went there. He wanted to introduce himself (we know already him as he was Eldest Ds's HOY when he was there) and said he would like to give Ds a tour along with the Senco in early September before school starts. He said he's happy to be a point of contact and we can email him any concerns during the next few months. Not sure if it's the right school for Ds but good home school communication is a start. We have never really had that before.

That sounds encouraging, Punx. Good home school communication is absolutely key. Especially when you have a child or young person who can't remember what he's been told or gets hold of the wrong end of the stick.

Ellie we are going to try and stay open minded about this school, it of course may not be right and that's absolutely fine. Back in January when we went to their open evening the Head of 6th Form did tell us that they have applied for needs assessments and used specialist autism outreach for some of their sixth formers so they must have some experience!

If his anxiety is too much and he can't manage it then we will rethink. I'm certainly not worried about the academic side of things. The priority is trying to get him engaging with life and any support we can get him.

Will also try to get some more information about the specialist college, although the lack of EHCP is the biggest issue with that one.

Looking at the needs assessment application. Do the panels still make decisions on whether to assess during the summer holidays?