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Jeap100

School refusal/phobia (long term)

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Hi - just felt like sharing my despair and looking for moral support and radical suggestions.

 

My son is nearly 17, should be starting sixth form this term, but has not attended school since the first term of Year 9 (when he was just 14). He was due to start this morning doing catch up English and Maths at a local college, but would not go. My disappointment if fresh and raw!

 

He is diagnosed with Asperger's, anxiety and depression and experts believe he had a kind of breakdown at school (mainstream) and could no longer cope. Since then we have had three attempts to start new academic years - all failed.

 

I managed to get him a statement a couple of years ago.

 

We have had a string of Education Other Than At School tutors, some of which have been great for him, but none of which have managed to transition him back to school nor get him to do any work. He is in effect uneducated, has not qualifications and is totally socially isolated. He leaves the house very rarely and has no friends. He does see peers occasionally when it is arranged and scaffolded by me with the help of my friends, but as he/peers gets older, this is becoming harder and harder to arrange.

 

To make matters more complicated, he won't accept his diagnosis, so does not accept specialist help and won't go into a special unit. He has always refused to go to CAMHS. He spends his whole time on his PC playing games and watching You Tube videos. I used to limit this strictly, especially during school hours, but he is a big boy now and it is harder. Three years of this has worn me down to be honest.

 

Today was the start of a new era for us. His tutors, Ed Psych and everyone else involved have spent the last few months preparing him to start college. He has been offered a lot of help and support to get there. I cannot complain that we have not been helped. However, now that he has refused to go today, I feel really desolate. I don't think I can stand this again. Do I give up on the idea now? What will he do? If I go back to work (I had to give up my job while all this was going on) I will be leaving a young man alone at home doing nothing constructive. And what will become of him/us in the long term? Should I move to Shetland (a small community that he has to be part of)? Get him sectioned? Abandon him for a while, leaving him with money on the kitchen table, in the hope of forcing him out into the world (he currently relies on me for everything)? All these awful thoughts go round my head and I really don't know what to do for the best. I feel sorry for him because he is genuinely frightened and anxious, but I am also so angry with him for not trying and not seeing that he has to do something. I guarantee that all the sensible, logical steps and approaches that you will all suggest, I have tried. I need radical suggestions.

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This sounds similar to me but not the school way but the college way. His depression seem to be getting in the way of his attendance. This is the area I was having. I was on mainstream course trying to get my English and maths up to qualification levels but my mental health was bad and I ended up going 2 weekly until nothing. Does he have a college counsellor or a mental health facilitator to keep an eye on him and help him continue his studies with mental health. Mine stopped as soon as I stopped going every week

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Hi Jeap, I really feel for you and, of course, for your son. My own son is 19 and sounds quite similar, although I am lucky in that he has agreed to do a one year course at college to delay having to go out into the big wide world for one more year.

 

Is your son on any medication for depression or anxiety? It sounds as if he feels very safe at home and breaking out into the world is very daunting for him. Does he go out by himself to shops, etc? I pushed my son into volunteering at a local charity shop just purely to give him somewhere to go and a focus for the day, otherwise during the long 10 week summer whilst I was at work he would be at home on his own with no motivation to go out. He was reluctant, but, again, I am lucky in that he will do what I tell him to do and doesn't have strong opinions of his own (it's not a good thing in the long-term, but at least he's pliable at the moment!).

 

Would your son respond to an ultimatum, i.e. he goes to the college course or else he will have to get work/go to a charity shop/volunteer at local dogs home, etc? Would you be able to transport him to college to take the worry out of the journey and make sure he is delivered safely, maybe arranging to hand him over to a college counsellor when you get him there?

 

I know how worrying it is. My son will soon be 20 and next year he will be in the same position, no skills to get out there into the world, it is frightening.

Good luck to you both and sorry I wasn't able to offer much in the way of advice.

 

~ Mel ~

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Why did he refuse?

Had he been to the college before, several times, met his tutor etc?

Is it anxiety based? My son has OCD and his anxiety was a major part of him refusing school in year 5 of primary. He was out of school for a whole year. He is now in a school where he will be up to age 19.

Is your son ready for college. Academically he maybe capable, but socially and emotionally?

There are schools for capable children, but not many. And I don't know if your LA would agree to immediate transfer with a gradual return to school. My son started on 2 afternoons a week, and he only met with the speech therapist and occupational therapy.

The class sizes are only 8 pupils. He has gone from P levels to level 4 in science within 2 years.

He is on medication now for his OCD and anxiety.

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Hi all of you :) i cant believe what im reading here ! My 12 year old has been doing this since feb , lots of people are bending over backwards to get him sorted out .had probs all his life and its my opinion that he has high functioning aspergers the only obvious signs are extreem angry outbursts usualy resulting in something being smashed low self esteem and poor confidence , inability to make and keep friends does not go out due to severe anxiety. the other common symptons do not appear to be present . i will dispare if this is still going on at 16 , hes 12 now and refused to go to school since feb. any advise ppls as im at the beginging , is there anything you would have done differently ?

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Have you asked your GP to refer you to a Developmental Paediatrician who has experience of diagnosing children with an ASD [autistic spectrum disorder, which also includes Aspergers]?

 

When you say 'lots of people', who specifically is involved at the moment eg. Speech Therapist? Educational Psychologist? Clinical Psychologist? CAHMS? And what practical support are they providing to relieve his anxiety, and what does your son say is causing his anxiety.

 

He may have an actual Anxiety Disorder. My son does. My son also has OCD.

 

What cognitive ability does your son have. Is he around average, and keeping up with his peer group, or is he gifted in some subjects and struggles in others. Or is he not coping in school with how the lessons are delivered?

 

He may need small class sizes. Some mainstream secondary schools have autism units that maybe for children with Aspergers. But often it is for more severely autistic children, and they tend to feed the capable children across to mainstream lessons, which is no good for your son IF that is part of the cause of the anxiety.

 

There are some independent ASD specific schools for children who are cognitively able. My son goes to one. The fees are paid for by the LA. We won this school placement at an educational tribunal were we proved that the LA could not meet my son's special educational needs in a mainstream school [he was in primary school]. He refused school for all year 5. We could also prove that he was not local authority 'special school' material as he was cognitively around average but on top of an ASD he also has Dyslexia, Dyspraxia, Sensory processing Disorder, Anxiety Disorder and OCD. So the ONLY school that could meet his needs, which had the qualified teachers, peer group and therapy team employed on site was an independent school. This school also buys in a Dyslexia Teacher to teach my son once a week, and they also pay for a child psychologist to see him once a week. The psychologist is working on his anxiety and OCD behaviours.

 

For now you can phone your LA and ask to speak to the 'admissions' team and ask them to send you a list of their maintained, non-maintained, approved and independent mainstream and special secondary schools. You might find a school in that list that is specifically for children with Aspergers. But don't look at an emotional and behavioural school as that is for children who have those difficulties because of abuse/neglect etc and is not autism specific.

 

You can also write to your local authority and ask them to carry out a statutory assessment towards a Statement of special educational needs. The local authority may refuse to assess and you can appeal that decision to SEND [special educational needs and disability tribunal]. Or the LA may assess [and this would mean the LA asking certain professionals to assess your child] and still decide not to issue a Statement. You can appeal that decision too.

 

Is your son on school action plus? Does he have an Individual Education Plan? If he does, is he meeting his targets? Whatever is being provided currently is obviously not working as he is refusing school. So what is the school, educational psychologist suggesting to get him back into school?

 

I would also recommend you ask the GP for a referal to Clinical Psychology, and again ask for a professional that has experience of working with children with an ASD. You need their advice regarding the anxiety and how much pressure you should exert to get him into school. Because if he really is not coping, your forcing him into school could cause him to become mentally ill. But you need that advice from them in writing to keep the Educational Welfare Officer away, otherwise his continued absence could cause them to become involved.

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Hi to all repliers and many thanks. Lots of questions to answer, but basically we have been through all the LA and CAMHS channels and he has an official diagnosis and a statement. I know every school for miles around and have visited many of them. I have done the fighting at tribunal and have won and lost battles, but he still refuses to attend anything. The LA placed him in an Asperger's unit attached to mainstream school for year 11, but he refused to go. CAMHS tried a bit of CBT and had to come to the house as he doesn't go out, but he didn't respond to that and they pulled the plug. I'm sure he must have some sort of anxiety disorder now on top of the Asperger's, but where does that get us? There still is not magic pill for that. He has been assessed by NHS Occupational Therapy who found lots of motor and sensory issues. He is bright and on paper should be fine in school, but he is unmotivated and also quite oppositional, so he does not take advice easily. One of the major problems is that he now hates and denies the diagnosis and refuses any 'special' help. So, although he can't cope with his anxiety, he will not attend Asperger's/anxiety units/schools nor follow the suggestions to minimise stress because this singles him out (in his eyes). It feels like a Catch 22 situation.

 

The latest is that I have been talking to a therapist myself, because I was finding it all difficult to cope with (hence the despairing post here, which is quite unlike me!!!). He suggests that in addition to the underlying developmental problems my son has, we have now developed quite a lot of negative and unhelpful co-dependency issues. I now am trying to see that whatever I do to try to get my son out of the house and to college makes no difference. Three exhausting years of thinking of strategies, being tough, being sympathetic, being cross, being disappointed has got me nowhere. My son is nearly 17 and it has to come from him. So now, I will do everything to provide a secure home for my son and help him stay healthy and try to teach him to be more independent (cooking, cleaning etc), but I am going to get on with my life and go back to work. BTW, my son made it into college one morning last week which is a small step in the right direction!

 

Mr Dingleman - I hesitate to give advice, because we are not a great advert for success! Would I have done anything differently? Well, it kind of just happens and one thing leads to another - school suggested CAMHS referral which led to diagnosis, which led to statement because school said they could not provide for his needs. LA initially refused to assess, but agreed on appeal. I searched for schools, LA refused a nice independent one I found initially...etc...etc...so it all lasts months and months, and as the clock ticks, my son became more and more entrenched in his withdrawal. Part of me thinks a quick school transfer right at the start would have been better - but who knows? Most people say diagnosis is key to a good outcome and that it usually helps the child, although it certainly didn't in my son's case, so perhaps that is the place to start if you are sure your son in on the spectrum. Best wishes to you.

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Hi Mr Dingleman

 

I've been down a similar path to the one described in Jeap's last paragraph.

 

School refusal proper started for us nearly 2 years ago at age 11 after Oct half term of Yr 7. Got referral to CAMHS, got turned down, got re-referral and accepted. In meantime arranged for my son to start a different school in the Jan, we stumbled along till Feb half term and then complete school refusal. We saw CAMHS and got diagnosis for high functioning ASD. We applied for statement (statutory assessment), got turned down, put in appeal and then local authority agreed - Sept of Yr 8. Got statement in Feb of Yr 8 which was no good because it suggested mainstream which clearly hadn't worked. Put in appeal, got tribunal date of 6 months later (this Sept - start of Yr 9). Finally after being out of school for over 1 yr, April of Yr 8 we started getting some home tuition. We paid for independent assessments and reports from psychiatrist, ed psychologist, speech and lang therapist, occupational therapist. Looked at schools etc. told LA we wanted a particular independent ASD school. 2 months before tribunal they agreed to the school. Tribunal has only just been cancelled with a few days to go as we were still getting agreement on rest of statement. And my son started at the ASD school 3 weeks ago and all going ok so far.

 

I am not too sure what I would suggest about doing things differently. Unfortunately nothing moves fast and there is a system you have to follow. Your best way forward is to get a diagnosis, apply for a statement (can do both in parallel) and look for a school that may suit him. Also try to get some home tuition in meantime. Ask everyone you can for help.

 

Contact www.sossen.org.uk or www.ipsea.org.uk for help on statementing. You may also find this helpline useful http://www.youngminds.org.uk/ and www.autism.org.uk - I phoned both at the beginning of our school refusal.

 

Does he want to be in school in theory?

 

Also check out this forum: http://www.schoolrefuser.org.uk/

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Jeap, is your son on any medication for Anxiety? My son is on Sertraline, which is helping with the Anxiety to some degree, but not really with the OCD issues.

 

Did your son ever get a placement at an independent school? Did he ever try a trial period there?

 

Now that he is 17, and you want to return to work, which is a right you have; I suggest you write to the Head of Social Services and ask for a Core Assessment and also a Carers Assessment. I know it is more 'stuff' to work through, and it hasn't been perfect for us. Took a complaint to the Local Governments Ombudsman to get them to assess. But the LGO did find in my favour and did order that I was paid compensation! And SS recommended one night sleepover at his current school, which I am trying to get increased to two nights.

 

Anyway, my experience from SS is that they are usually crisis management. However if you can get the Core Assessment done, and they make recommendations, you could complain to the LGO if they put nothing in place. He needs some life skills. And he needs some kind of social life. Your son might be eligible for 'Direct Payments' and that would mean him having some money to 'buy in' some care. There are alot of companies around that can provide care/social support. My son goes out once a fortnight for 4 hours. This allows him to do stuff like go to the cinema, buy some XBox game etc. It frees me up too, as does the one night a week overnight in school.

 

I'm afraid you really do need to get them into a corner whereby they will be penalised if they do nothing. I could the Centre for Independent Living very helpful with advice. I think their name has changed, but might be worth speaking to them. It was them that recommended I put my request for a Core Assessment in writing, and that if nothing happened to complain to the LGO. That worked. Prior to that I had just spoken to numerous people for years and got nowhere. I kept being told my son did not have moderate learning disabilities and therefore did not fit SS criteria for support. That is not true. Anyway good luck with it all. It maybe that your son gets lonely if you are at work and might even agree to do something or go somewhere. But as this is his behaviour, I think you need SS involved because at some point you will not be around anymore, and he is invisible to the system at the moment.

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I can't offer advice about education or integration but what I would suggest is setting up a strict regime if household tasks he MUST accomplish before he is allowed his computer time. These would include some significant household chores (after all if you aren't in education you must earn your living somehow) and strict rules on eating meals with at least one other member of the family and it should be given a minimum time frame and discussion of the days events etc.

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If he still refuses to attend college, then he will have to face spending the rest of his life in a nursery home. Tell him that you won't be able to cope with his eccentrics, and throw him out. An AS dx is no excuse for doing nothing.

(My dx dates from 2007, so I had to pass through school, university and doctorate without).

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