Mental health support for autistic teens

[Punxsutawney]

Ds is 15 and was diagnosed with autism in September. He has long term very low mood. He is isolating himself from the world. He has very low self esteem and would tell anyone he is useless. He has no friends. When he's having a bad week he struggles to eat.

We are trying to source some mental health support for him as we feel we don't quite have the expertise to really help him now.

It seems impossible to get help. I spoke to our gp a couple of weeks ago and she said she would do a camhs referral. She phoned last week and said he needs to come in and see her as she had contacted camhs and they won't even consider a referral until she's seen him. I have also been told by a couple of health professionals that camhs in our area won't see autistic young people. Ds attends a ASD youth group but he struggles to cope with that, so it's not really helping. Ds has very poor social skills. His assessment report says he has significant difficulties with communication and interaction. The paediatrician told us at his diagnosis appointment that there is no support she can offer. Her words were 'the school need to sort this out'.

School haven't been great. He has been having one mentoring session a week with a TA but Ds doesn't share any of his worries and basically says what is needed to get out if the room as quickly as possible! They have offered this week to refer him for counselling through the local authority. My concern with that is if it's not someone with experience of working with autistic young people then it probably won't work.

We feel like there is so little support for autistic teens. If we could find the right support we would try and pay privately if needed but I don't really have any idea what I'm looking for.

How on earth do you help an autistic teen who hates himself and his life and wishes he had never been born?

[rjp3141]

Hi, I really feel for you as have a similar situation with our dd who is 14 and was diagnosed with asd about 6 months ago but we are fortunate (in a way) that she is under camhs due to self harm, depression and anxiety. You could try your local Mind service, it's a long story but through them I've managed to find a well being practitioner who has a specialism in asd and she'll be starting some support with dd soon I hope (Lancashire). It'll only be for 8 weeks but it's something. Have you spoken to the senco at school? I've found it so frustrating so really appreciate where you're coming from.

[Punxsutawney]

Thanks rjp. I'm glad your Dd is getting some help and intervention now. I hope things improve for her soon. I don't think Ds's referral to camhs will be accepted and he is considered low risk, so understandably even if it was accepted the wait would be 8 to 10 months.

I haven't thought about contacting Mind. I do think someone who has a specialism in autism would be helpful and have more idea how to engage a teenager who struggles to communicate.

Ds's Senco doesn't really have contact with parents, she is very much behind the scenes. Pretty much all her work is done by a TA. I do have plenty of communication with the TA though and she is helpful. They have known for months how bad ds is feeling. Again ds is not a good communicator, I can see a counselor saying that he won't engage, I guess we need to wait and see.

It is terribly frustrating, there seems to be a thought process that autistic young people can't have mental health issues and it's just their autism. Ds's issues I think were caused by his late diagnosis and lack of support in school but now they are a separate difficulty that needs sorting.

Good luck with the well being practitioner.

[AnneOfAvonlea]

Go to BACP and find a psychologist who specialises in autism to treat the anxiety. Wont be cheap but this us what our psychiatrist who diagnosed advised us to do.

[AnneOfAvonlea]

Www.bacp.co.uk

[Punxsutawney]

Thanks Anne.

[Pippioddstocking]

Yes try BACP thats where we found help with a private psychologist specialising in children with Autism . Expensive but worth it .

[Ellie56]

It is terribly frustrating, there seems to be a thought process that autistic young people can't have mental health issues and it's just their autism.

And yet the psychiatrist who saw our son 4 years ago said the incidence of mental ill health in people with autism was much higher than in the general population. Maybe some are more clued up than others.

Social Services should be able to signpost you to appropriate services in the community. Are there any groups in your area who offer drama/ art/music/ therapy?

If you are anywhere in the East Midlands these are good.

www.inspirativearts.co.uk/

[blimppy]

Hi. In our experience with our DD, CAMHS won't work on Anxiety and Depression in teens with ASD. Our daughter has Anxiety and by the age of 16 quite severe Depression with a history of self harm. She also had undiagnosed ASD. She was diagnosed at 17 and CAMHS immediately stopped all treatment for Anxiety and Depression "because we can't cure autism". We used a private, BACP, counsellor for several years. Expensive but has really helped. In my view, CAMHS are completely out of order with this approach however.

[Punxsutawney]

Ds's school referred him to 'Early help' through the LA just before Christmas. I'm not really sure whether that is really what he needs. His school are so unsupportive they have told us that we need to pay for any support the LA/Early help offer.

As far as camhs go, I'm not hopeful of the referral being accepted and neither is the gp. Will probably be another six weeks before we hear what their decision is.

Ellie the local ASD youth group that we found is great but Ds can't cope with it and has told me he is not going back after Christmas. It's a real shame as they are a lovely group of young people and great staff that are all professionals that volunteer their time for this group. Back to the drawing board on that one.

It looks like the mental health support will have to be something we pay for unfortunately. Although I'm determined not to pay the bill the (state) school want to send us. I hope we manage to find the right support for him in 2020.

Thanks for the advice everyone.

[BlankTimes]

Punx - Back to the drawing board on that one

Try and think outside the box a bit, don't be defeated so easily, you really need to push and push to get the results for dc with SN.

e.g. Could any of the staff at the youth group see your DS 1to1 at a rate both financial and frequency that you could afford in a mutually suitable location? Would your DS be happy with that? Is there any one person he feels he could relate to?
I'd approach them anyway and say he's too overwhelmed with a group setting, is there anything else they can suggest.

Also on the wider issue of getting him support, for ECHP and PIP, the more evidence you can supply the better. could you approach his primary school and ask for a copy of his school records, there may be things in that which will be of use to support your applications.

Same for his GP records, you can ask at your GP practise. When I got DD's I had to pay around £70, but now GDPR is implemented, they may be free, do check.

It will do no harm to ask for those now, plus anything else you can think of, then you have them to hand whenever you need to refer to them. Saves a lot of time further down the line.

[Punxsutawney]

Blank we have decided today to look into applying for an EHCP. The school have contacted me to tell us that the LA have organised some counselling and the counsellor wants to go into school next week.

On the same email they have told us that the finance department in school expect us to pay for this asap. They have actually set up a payment in the 'shop' on the online pay app. Like we are paying for a bloody school trip to a theme park. It's his mental health we are dealing with not a trip or a music lesson. They completely lack any care, compassion or understanding.

Interestingly a couple of the staff at the youth group had already offered some one to one support free of charge. One is a lovely lady who worked for over 20 years in an ASD unit in mainstream and the other is a speech and language therapist. Ds is just adamant at the moment that he won't have anything to do with the group or staff. I'm going to contact one of them and explain he won't be back for a while and keep my fingers crossed that at some point he may see the benefits of this group. I'm taking the pressure off him about going at the moment though as it causes lots of stress. Ds says it makes him feel terrible as he can't or won't communicate there.

I need to sort myself out a bit too and continue to fight. I'm having quite a difficult week. I had no idea the impact of all this on my own mental health. I just completely lost it the other morning (thankfully ds was at school) Dh works from home and was here he said he thinks I need to see the gp. My priority at the moment though is getting Ds the support he needs.

[BlankTimes]

It's odd the school are now doing stuff. I wonder if they've discovered they HAVE to do something at this stage. I echo your thoughts on is that counsellor trained in dealing with kids with autism? if not, it's a pointless gesture on their part.

Can you post on AIBU with a title like Can school legally do this? about the school trying to make you pay for the things they have put into place without even consulting you? It's a very popular board and hopefully someone seeing your post there will know.

It is hard to keep fighting through all the setbacks but what I've found worse to deal with is the absolute injustice of the whole system and the frustration it causes, being bounced from pillar to post and back again, often with no resolution.

I'd echo all the oxygen mask advice that's out there, first put your own on, because only then will you be able to help someone else.

However, surely your DH can help with some of the clerical side of it, the ordering medical and school records, googling the law on what a state school can ask a parent to pay for, finding out exactly what information you need to be successful with an EHCP, (I am clueless about them) putting deadlines on the calendar, that sort of thing. When I first started on this long road, I didn't even have a computer, at least nowadays the info is out there and can be found fairly easily.

One thing that may make it a bit easier for you. draw a line now and don't beat yourself up any more about what you think you could or should have done in the past. It serves no purpose.

Treat everything from now on, that's the situation with school and the EHCP as a brand new projects starting from now.
Imagine you're a new Project Manager who has been brought in to take over, see the situations as they are from today and deal with them accordingly.

[Tableclothing]

Have you contacted your local SENDIASS? I guess they'll vary from place to place but ours is brilliant and has a much better grasp of what's available locally than any of the GPs do, they might be worth speaking to.

[Punxsutawney]

We were aware of the referral as I was quite surprised when they first suggested it, I thought they might actually care (I was wrong!). When I queried a little bit about it they then told us payment was our responsibility. They did say we could make our decisions about it when the offer of support came through, it's organised for Monday now, so we never actually said 'yes' in the end. The offer is for 5 sessions.

We feel that it is not our responsibility because they have asked for support for Ds's ASD. I've seen the referral form and it says to we are looking for support for junior punx to help him with his autism and help him interact at school (as well as support his mental health issues). We feel it comes under sen support not just counselling. I believe as well that they should not have put the finance details on the same email as the details of support. It was sent by a TA, surely finances are not her responsibility or concern. If they want to request money from us that contact should come from someone in the finance department of the school.

They have given me the name of the counsellor, so I have of course googled her. It says briefly she has worked with young people who have SEN. If she doesn't have much experience of ASD she might be in for a shock, he is not easy to communicate with at all! I'm still not sure it's exactly what he needs though. I think a professional who is experienced in ASD and communication issues would be best placed to really help and support.

Sendiass aren't hugely helpful. Dh has had some contact with them. They have told us that it is a grey area. They would expect the school to pay but there is nothing legally that can make them pay. They seem to be hesitant about us applying for an EHCP too so not very encouraging. We are going to sit down and look at what is involved with that at the weekend.

I might post in AIBU, unfortunately I think Sendiass are probably right. Most schools would pay for this but I don't think we have any way of forcing Ds's to do so.

[Ellie56]

Is this a mainstream school Punx?

[Punxsutawney]

Yes, it's mainstream state grammar, all boys. They are an academy but not part of a multi academy trust.

In hindsight a terrible choice for him. If I knew he would get a diagnosis and that things would have fallen apart so much I would have avoided this kind of selective environment. His older dyslexic brother went to our local secondary modern and they were amazing. A big mistake by us to choose this school, I just didn't know that things would end up like this.

[Ellie56]

Don't beat yourself up Punx. None of us know how things are going to turn out and it's not your fault the school are shit at providing for a child with SEN.

[Ellie56]

If I'd known what I know now, I wouldn't have wasted so much time hanging around waiting for the LA to do the right thing. (They were never going to do the right thing until forced to do so by the law ) and my son might not have spent a year out of education.

[Punxsutawney]

Ellie it really is appalling that your son was out of education for a year. I'm astonished when I read about what some children and families have to suffer.

I probably shouldn't feel guilty but I do. I think it's because I have always had some concerns Ds was autistic I just didn't pursue it early enough. A diagnosis at primary or even earlier (bearing in mind he spent a year seeing the speech therapist as a toddler) would maybe have stopped us sending him to this school or maybe facilitated some support before it all went down hill.

I guess though grammar or not they should still be helping him. They just seem to have so little understanding of his needs. Their percentage of students with SEN is relatively small but that is not really an excuse.

[Ellie56]

Yes Punx he was out of education for a year, and because he was not of statutory school age, the LA weren't obliged to provide any tuition.

However he did access a lot of therapy during that time. He went to CBT and to drama and art therapy, which built up his confidence and self esteem, which I believe stood him in good stead when he finally went to a residential specialist college 160 miles away from home.

Ha! One stupid woman at the LA said the year before, "We don't fund placements out of area." Yes they did.

Another stupid woman at the LA said, "He's unlikely to get a second year, and he definitely won't get a third year," Oh yes he did.

A third stupid woman told our solicitor, "We don't have to abide by Tribunal regulations." Oh yes you do.

I sent a letter of complaint in. They were just as crap at dealing with complaints. DS wrote and told them exactly what he thought of them. They ignored him. So much for LAs having regard to young people's views, wishes and feelings.

I went to the Local Government Ombudsman. They found in our favour . The LA were told to pay DS £1000 and us £500 to compensate for all the crap they had put us through. They paid up. Best of all, the arrogant obnoxious woman, who had consistently ignored all my emails had to sign the grovelling letter of apology.

DS's story appeared in this publication.

www.lgo.org.uk/assets/attach/4197/EHCP-FINAL2.pdf

[Punxsutawney]

Wow Ellie I've had a quick read through some of the children's stories in that publication. It's sad that so many out there have to fight so much. I will read it more thoroughly when I get a chance.

I have talked to Ds this evening about the counsellor coming into school tomorrow. Turns out school has already chatted to him about it. He seems okay at the moment. He will not give me any feedback afterwards so I just hope it will be useful for him.

He doesn't know about the financial situation behind it all though so that is something we will have to deal with without his knowledge.

[Ellie56]

I think it's outrageous the school are trying to make you pay for this.

Quite frankly Punx if the school can't afford to pay for the therapy, the LA should be paying for it, as it is an educational need. He needs it to be able to continue to attend school.

[Punxsutawney]

The local authority are paying for half of it as it has been organised through the 'Early help partnership'. The LA tend to sort these referrals quite quickly (this referral was done the week before they broke up from school). I think the expectation is that schools then pay the rest. Which I expect the majority of (if not all) schools would. They even wrote on the referral form that he has 'extremely high' anxiety levels and very poor communication skills because of his ASD. I truly believe that this help is to support his SEN, including his mental health and that's why we are confused about the demands for payment.

The way they have gone about asking us for the cash is so insensitive too. Saying that they are putting in the 'shop' catagory of the online parent payment app. It just makes me want to cry. Treating his mental health and SEN needs like some school trip to be paid for online. It was the learning support TA that informed us of this too, surely finances are not her responsibility. I expect the finance dept to contact us if they want money.

At the moment the payment is yet to appear online. Not sure if that's an oversight as I was told it had to be paid ASAP. Dh is going to email the headteacher this week. The Senco has told us in no uncertain terms (another email that made me cry) that because he doesn't have an ehcp that there is no budget for him and absolutely no money available but I would like the head to explain his school's stance on this.

They have let our boy down so much over the last 5 years that unfortunately nothing surprises me anymore.

[Ellie56]

It's absolutely disgraceful Punx. Putting it in the "shop" indeed FFS! What if you can't afford to pay? Would the school just allow him to sink further and further? If they can't afford to pay, they should go back to the LA and get them to pay for the whole of it.

I think I would make a formal complaint about the way the school have handled this. They should hang their heads in shame.

I really think you need to apply for an EHC Needs assessment. Your poor boy clearly needs specialist support. and if he doesn't get it, he's not going to achieve educationally what he is capable of and his mental health is going to deteriorate even further. Indeed a lot of kids get to the point where they start school refusing.

I know a girl who was in a similar situation. She was diagnosed with ASD when she was 15, and then only after having a complete nervous breakdown. After that, she was in and out of various mainstream education providers for years. Each September she would start at a new place, and each time she dropped out after a few weeks, as she just couldn't cope. When she was 19, she finally got her EHC plan and a specialist placement.

At my son's ASD specialist college, a lot of the students had previously been out of education for anything up to 4 years. Don't let this be your boy.

Unfortunately, getting an EHC Plan won't be easy, and will probably take ages as the LA as in so many cases, will probably drag their feet all the way. Just be aware of, and keep on top of the timescales, and be prepared to appeal and fight all the way. Around 86% of parents win at Tribunal.

Make sure you get reports from SLT and OT as part of the assessment. SLT covers social communication which ASD children and young people really struggle with, and the OT assessment may uncover sensory issues, another thing that affects ASD people more than we realise. Advice here:

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

If you need help you can ring the IPSEA Advice Line. The appointments get booked up very quickly so you have to keep looking as the advisors put their own appointments on and they get put on at all times of the day, even late at night. There's also a lot of useful advice on their website. SOS!SEN are also a useful source of advice.

www.sossen.org.uk/

Marguerite Haye who is Head of this organisation is absolutely fantastic. When she worked at our LA, she was the voice of reason and was instrumental in helping our son get the placement he wanted.
She has also just set up their own assessment clinic.

www.sunshine-support.org/assessments

These people are good too. Evelyn Ashford who set up Education Equality has spent years fighting for her son, and knows the law inside out.
www.educationalequality.co.uk/

So sorry you are going through all of this. It's so stressful, so frustrating and so UNFAIR!!

Look after yourself Punx. You won't be any good to your DS if you fall apart. Stay strong.

[Punxsutawney]

Ellie thank you for taking the time to write that detailed reply and providing links, it's much appreciated. You are right about needing to do the EHC needs assessment. It's quite daunting and like you say won't be easy. I'm not sure what the Senco will say either.

Ds met with the counsellor today. He said it was okay but didn't say anymore, he was a little subdued after school but that does happen quite a lot. I've told him that I'm happy to talk about the sessions if he ever wants to but I understand completely if he doesn't. I'm not sure when you are 15 and autistic with some complex stuff going on in your head you how easy it is to share what is going on. Unfortunately Ds blames me for his autism diagnosis and other associated issues so at times he gets upset when we do talk.

I'm still continuing to struggle a bit. I had no idea how stressed I have actually become until the last few weeks. I have had two really unpleasant bugs in the last month and I just can't shift the second one. I still feel really quite unwell, I've not really eaten properly for about a month. I'm convinced that stress has had an impact on my immune system. I feel completely useless at the moment, just managing my very part time job but struggling with everything else.

Dh and I need sort out our formal complaint too. We also need to sort ourselves out for the meeting with the Senco at the end of the week. It feels like there is so much to think about. I'm hoping tomorrow we can get ourselves started on it all.