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?

Punx Perhaps you should go to the GP and get signed off for a bit. Stress can be really debilitating and you won't be able to function properly if you're stressed out. I've been there so I know how it feels.

I wouldn't give a toss what the SENCO says. She's probably just trotting out the LA line which is likely to be unlawful anyway.

It's so sad that your son blames you for the autism Punx - but hopefully with the right kind of therapy he will come to see it differently in time.

My heart broke the day my son told the therapist he was ashamed of being autistic because it caused so many problems for us. He was at rock bottom then and had so little confidence I had to sit in with him in his therapy sessions.

Thankfully after three years in the right educational environment, with staff who really understand autism, he has come out on the other side and is now a happy confident young man, who manages to keep his anxiety under control most of the time..

Ellie it's wonderful to hear that he is 'happy confident young man' now what a great outcome for him and you too! He has done so well considering the difficulties he has faced.

Yes Ds absolutely blames me at the moment for what is going on in his life. I just desperately want to help him though. I guess he is a teenager too so there will always be a bit of that kind of angst going on alongside the more complex stuff. He was in denial about his diagnosis for quite a while. It's difficult at times to know when to step in and when to back off. He's a very isolated young man with obvious communication difficulties that needs a fair bit of support but he is confused and doesn't understand why some things are happening to him.

He says he hates school but does not seem to understand quite how much their lack of support and compassion have caused so many issues. I think it's so normal to him that he can't recognise their failings. I would like just one member of staff to listen to our concerns. Senco told me in her email that 'we would anticipate the needs of a pupil with autism would be accommodated by the pedagogical practices already in place'. They are not even willing to consider what his individual needs may be. I'm not sure why nobody seems to understand.

The mix of teenager, autism and mental health difficulties is quite a challenge! I'm going to give myself a while longer to see if things improve and then I might see the gp because I don't like feeling like this, things are not right at the moment. I am always aware though that many children and families are going through far more difficult circumstances than we are so I do feel some guilt at times when I moan and complain!

"We would anticipate the needs of a pupil with autism would be accommodated by the pedagogical practices already in place". Really?

I'd be telling her in no uncertain terms that the pedagogical practices currently in place were currently not meeting my child's needs as he is extremely stressed out by school and hates going!

Was does their SEND policy say?

Your SENCO sounds like the ghastly Senco in this thread Punx who said on page 1 " that his diagnosis means nothing moat [most] children with asd don't need support in school."
www.mumsnet.com/Talk/_chat/3794871-So-how-do-i-tell-my-ds-to-go-to-school?pg=1

They are not even willing to consider what his individual needs may be. I'm not sure why nobody seems to understand

But they DO understand Punx, they understand 100%, they just can not be bothered to do anything because they have one method of teaching and if someone doesn't fit into that mould, they want them out, so they make life unbearable for them until they leave. They don't care. You have even quoted his senco saying that.
we would anticipate the needs of a pupil with autism would be accommodated by the pedagogical practices already in place'

It's an absolutely arrogant and despicable thing to say, but it's that school's ethos. You can't make them treat him as they should, you can't make them help him, they don't want to help him, Senco's email says that as plain as day.

Translation - we don't care if he's autistic or not, we are not going to implement any adjustments for him.

It's like going to a restaurant with a one meal option. You either eat it or go somewhere else, but even if you have a serious allergy they will not alter their menu. If you can't eat it, you have to go elsewhere.

I'm going to give myself a while longer to see if things improve
Please, put your own oxygen mask on NOW, so you can help him, don't be so run down with it all that you can't help him if something happens. You need the inner strength to draw on, start now to build up your reserves.

Their attitude isn't going to change, no matter how wrong they are and how right you are. The frustration as a parent is immense, but you need to see the reality of their actions, not what their actions should be. That school (and sadly they are far from being the only one) are NEVER going to do anything to help him, he doesn't fit their blueprint, they ignore all the bullying, they can't legally kick him out because he's not done anything to warrant that but they can and are making things as miserable as possible for him and you (the bill thing plus dealing with his MH) so that he leaves because he can't cope any more.

He says he hates school but does not seem to understand quite how much their lack of support and compassion have caused so many issues
Part of that non-understanding may be because he finds it difficult to put himself in other peoples' positions and to be able to see a situation from different angles. To me this sounds like an illustration of his autism in action. Rigid thinking, inability to comprehend others' stance or points of view, little to no flexibility in opinion, no comprehension of what school should be doing to help him, no understanding that they should support him, they never have, so in his experience he won't expect them to.

What's blindingly obvious to you and I about the situation in school will probably never have occurred to him. If you need him to understand something, you need to explain it to him first, never ever assume he's caught all the inferences of any situation, always make sure he has a rounded understanding.

Blank you are completely right with what you are saying. At times I think I am putting off doing things and thinking that things might just get better with the school but I know in reality they won't. It's absolutely no excuse but it feels like we were given his diagnosis with no direction on which way to go and found ourselves trying to support Ds without proper knowledge of the SEN system.

Ellie their Send policy on the website is pretty much what you would expect a school to say. Meeting individual needs, inclusive environment, identifying and assessing send as early as possible, etc etc! Not quite what Ds or ourselves have experienced so far. It doesn't actually mention pedagogical practices, just that they do all school autism training. Unfortunately half a day inset does not mean they don't need to offer any extra support to an autistic student. That's pretty much typical for them. They really are a school that portray themselves in a certain way but behind the scenes things are not anywhere as good as they would like you to believe. Last Ofsted was 2011, so that's not even up to date.

The Senco has never been approachable. She pretty much delegates all her work to a support TA. The TA writes the SEN plans, does all referrals and has nearly all the contact with parents. The contact we have had with the Senco is always her just quoting things at us, to explain why the school can't help. Her last contact which was a reply to our enquiry about paying for support said -

'Since your child does not have an EHCP he has no personal budget. We do not identify the way in which any proportion of our budget is directed towards the educational provision of any pupil, other than those with EHCPs'.

Dh has had a bit of a wobble today and doesn't think we should make an official complaint about the finance situation. He thinks it would make things difficult for Ds. He says Ds should be the priority not pursuing complaints. I don't agree with him, things are difficult for Ds anyway. We have let him down in the past so I'm keen that we don't this time. Not sure what to do now though as far as a complaint goes. I think I will see what the Senco (if it's her in the meeting) says on Friday when questioned. If she is still insisting we need to pay then I really don't have any choice but to take it further. I will do it alone if needs be.

I have found it useful just writing it all down this week so thank you both Ellie and Blank for replying 💐. It can be quite a lonely and difficult process so having advice from those that really understand the situation so helpful.

If this useless ill informed SENCO is still insisting you need to pay for the therapy I would ask her to show you in the SEND Code of Practice exactly where it says families must pay for SEN provision.

Sections 6.95 - 6.99 of the SEND Code of Practice 0-25 years January 2015 gives information about funding for SEN support.

assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/398815/SEND_Code_of_Practice_January_2015.pdf

In particular section 6.99 says:
Schools are not expected to meet the full costs of more expensive special educational provision from their core funding. They are expected to provide additional support which costs up to a nationally prescribed threshold per pupil per year. The responsible local authority, usually the authority where the child or young person lives, should provide additional top-up funding where the cost of the special educational provision required to meet the needs of an individual pupil exceeds the nationally prescribed threshold.

Tell her to sort it out with the LA and if she doesn't back off you will be filing a formal complaint.

Was ever a person so unsuited to their role?

I notice the last Ofsted inspection was 2011, so 8 years ago. Were they graded outstanding (ha ha) last time?

Yes they were graded Outstanding. The head had only been in the role for a year then. Last year they had a big rise in permanent exclusions. There was thirteen in a few weeks. They were all drugs related. Boys either consuming or having drugs in their possession on school premises. I did wonder at the time whether that would trigger an inspection, but no!

I genuinely could write a book about Ds's experiences there. He was even mocked by a teacher once. I'm mean seriously what kind of school thinks that's okay.

I found a government information booklet online from 2016. School counselling - a blueprint for the future. It suggests in there that for those children with SEN that require counselling them the notional SEN budget could be used. Senco says that is spent on things like homework clubs, TA support in classroom, assessments and small group work etc. She also said that only children with high needs (not Ds) would be able to access this support. She said that they will only look into more support for Ds if feedback from teachers suggests that it is needed. This of course is the school that failed to spot his significant communication and interaction difficulties.

Ds did give me a hug before bed tonight, I asked if he felt he would like one, he normally says no! I was helping him sought out his cuddly toys. He really struggles with physical contact, so I did appreciate it. Although I'm feeling so sad at the moment I keep telling myself that this is about getting Ds what he needs and allowing him to reach his potential..... He has so much to offer and things could be so different.

it feels like we were given his diagnosis with no direction on which way to go and found ourselves trying to support DS without proper knowledge of the SEN system

I think that happens to everyone Punx, our dealings with the SEN system were blocked at every turn (now I know it would have been because of funding) and we were never told how things worked or how to get help or find info.

Have received a letter from the gp surgery this morning asking us to make an appointment to discuss Ds's referral to Camhs. It says they have received a letter from the clinic.

That can only mean one thing, that his referral has been rejected.

Why on earth do they not take our young peoples mental health seriously? Poor Ds, it took a lot of courage for him to talk to the gp about how he is feeling. He thinks that nobody cares and who can blame him.

Would they really waste an appointment to tell you Camhs can't see him?

Unfortunately Blank it seems that they are willing to. I popped into the surgery on the way to work to make the appointment and asked the receptionist if she was able to confirm that was the case. She said it was and the appointment was to discuss how to 'move forward'.

I've told them that I'm coming alone. Ds has already told the gp he wants help. It's just rubbish.

I'm just so fed up especially for him. I'm not going to tell him at the moment. He's had a bad day. He told me in the car on the way home that he's being picked on again about using his laptop. He desperately doesn't want me to report it as last time I did the boys got into trouble and then picked on Ds even more. It just all feels so crap at the moment.

Have a look and see if there is anything on here in your area.

www.annafreud.org/on-my-mind/youth-wellbeing/

Also look at childline.

www.childline.org.uk/get-support/

Thanks Ellie will have a look. I don't want Ds to think we aren't trying our best. When I talked with him about seeing the gp for a camhs referral I said that I hoped that they would help. I don't want to let him down.

It really has been 'one of those weeks' and I haven't even got to the Senco meeting yet!!

Also if you have not done so already try contacting the NAS to see if they can offer/suggest anything and check out autism support services in your area.

www.autism.org.uk/

www.nhs.uk/service-search/other-services/Autism%20support%20groups/LocationSearch/310

I haven't actually ever contacted them Ellie. I was going to last year as their were issues around Ds's diagnosis and trying to get the consultant to actually write a letter to confirm it. In the end I ended up complaining to PALS so I never actually got round to contacting the NAS.

We are going into school this afternoon to meet the Senco. Ds has talked quite a bit this week about being picked on again. There is no answer to that though because if it's reported then they will make things even worse for him. It now turns out after chatting with him that's he's not using his laptop when he should be because he says that students make nasty comments when he does.

Dh and I have started attended a monthly ASD parents support group, we do find it useful but it's for parents only not children. Ds completely refused his youth group yesterday. I don't feel I can push him to go as he just can't cope with it there.

He was very anxious last night. He wouldn't come down for dinner and I found him in his room just staring into space. He tried to describe to me how he was feeling by using a cuddly that is a bigger plush holding a little one that is stuck on with velcro. He told me that the smaller plush is him and the bigger one is stress and it completely surrounds him and has hold of him. I guess every day feels difficult for him.

That is so sad Punx but it is good that he can convey to you how he feels.

I remember the first time my son described to me how something felt. He was about 10 and he had done something really good, something to do with homework, I think. I was really proud and wanted to let the school know as I knew they would also be delighted.

I said I would tell Mrs S (his TA). DS was horrified. "Oh no, don't tell Mrs S!" I asked why not.

"Because she'll tell Mrs B (the teacher) and then she'll tell the children and they'll all look at me and put their eyes on me and that's scary."
I was amazed.

Why does your DS get picked on about the laptop? Is it just because no-one else does it and he's different? The school should be more proactive about dealing with that. They could have words with the class that a teacher had overheard someone saying something, instead of them knowing DS has complained.

His school sounds spectacularly useless and unhelpful. No wonder the poor boy is stressed out.

Ellie your Ds was really thinking that through at 10. He could see how you contacting the school might cause him to become really anxious. I guess we don't always think about it in that way.

I think not many use laptops in class. Ds has lax joints in his fingers which makes writing difficult and consequently his handwriting is poor. It took months to persuade him to use it and on the first day he did someone said 'didn't know you were that much of a cripple'. That was dealt with but the boy took it out on Ds for getting into trouble. I've asked the school this morning to inform the teachers and if they hear anything to discreetly put a stop to it. School say the laptop has to be used because it is evidence of his normal way of working and they need print outs for the exam access arrangements file

This week the comment was 'who do you f-ing think you are using a f-ing laptop. Do you think you are someone special'. This was in a class that he hadn't used it in for ages. I know that secondary schools are harsh places and there is always a bit of banter etc but the things said to Ds are normally quite unpleasant. I'm not sure if the school expect him to be more resilient but he's not in a good place and he shouldn't have to put up with it.

The sad thing is, if he could only say something like, "Yeah I am special, unlike you, so why don't you just f-off," the little shite might leave him alone.

He shouldn't have to contend with this.

Well the learning support TA emailed again today to ask for payment for the counselling. They have now added it to the 'shop'. I have no idea why an SEN TA is chasing up financial things. I feel like paying it with bags of copper coins and just leaving it at the front desk.

The Senco says that they will not pay 'full stop' and it's a misunderstanding on our part. She said it is a private agreement (nobody told us that). She said they would never commission an outside counsellor as they have one in house, which nobody mentioned to us. We never once asked them to do this. They offered to do a LA referral. She said it was like parents asking her for a private tutor and her giving them a name. It's absolutely nothing like that.

I'm not sure if we just pay it now, although I really don't want to but I don't want Ds getting upset or it being withdrawn. Dh told Ds about our disagreement with the school regarding the finances last week as we stayed on to talk to the Senco and Ds left the room. Ds got upset (I knew he would) and said he's not worth the money. I don't want him to think we don't care enough to pay. It's not like that at all, I just wanted to advocate for him and make the school pay for the support he needs.

Ds had his second session this week. He was rather troubled afterwards as they put them in the heads of year office and three members of staff came in and different times to do photocopying. Ds said he could not speak whilst they were in there. Not great when Ds struggles to communicate and not exactly confidential either.

I don't want him to think we don't care enough to pay
That's not what's happening, explain that as many different ways as you can but he's really got that one wrong and needs to understand the exact circumstances.

The Senco says that they will not pay 'full stop' and it's a misunderstanding on our part. She said it is a private agreement (nobody told us that). She said they would never commission an outside counsellor as they have one in house, which nobody mentioned to us. We never once asked them to do this. They offered to do a LA referral. She said it was like parents asking her for a private tutor and her giving them a name. It's absolutely nothing like that

There must be someone 'higher' you can raise this cobblers with Punx. It's the school timewasting and making his and your lives so difficult that you pull him out and go somewhere else.

How about making an appointment with your County Councillor and asking him/her to investigate the school's actions.

I'd refuse to pay, they've said they have an in-house counsellor, why wasn't your DS referred to them, why have school sourced a private counsellor without explaining their actions to you, tell them you want the free one and you want their appt with DS to be confidential.

Blank I mentioned asking the headteacher when we were talking to the Senco and she said he would say the same thing. I feel they have backed us into a corner and we have no choice. I want Ds to feel well again and I'm worried about them making life 'difficult' for him if we fight this. I have no idea why they didn't offer the free counselling service, not once have they ever mentioned it.

Ds says he is engaging with the counsellor, which really surprises me. I'm trying to stay open minded about how beneficial it is. I know him well and the limited communication he has with adults in school is normally him saying what he thinks they want to hear. She has some experience of SEN but she is not autism specific. I'm not sure how much he is getting out of this apart from time out of the classroom, which he does like!

I genuinely think the school think they are wonderful. She told Ds that he was lucky to have his 20mins a week with the TA. Said the name calling etc would be looked into but I've not had any feedback about that.

We also asked about an EHCP, she said that although it is our right to apply at any time, it's not something the school would support. She said she would tell the LA that they are meeting Ds's needs and don't need any more money to do so. Interestingly she didn't really know the process and I don't think the school have ever applied for one. I think they have a couple of boys in school with one but I think they had them when they joined the school. We are going to keep a close eye and will apply if we need to.

I did have a really positive chat and coffee yesterday with one of the lovely volunteers from the youth group they Ds now refuses to attend. She absolutely gets it and has an amazing understanding of ASD. She is now retired but spent 20 years working with autistic young people. She actually thinks that Ds would benefit from speech and language input. I'm hoping to meet her again next week with the SALT (who has in the past worked with pupils at Ds's school) that also volunteers. She had a few ideas and said she would try and help where she could. I'm not expecting them to be able to really do anything but even having a chat helps. I also have the appointment with the gp coming up to discuss the camhs rejection, although I don't hold out much hope with that one.