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Russell Evans

help for parents of newly diagnosed boy

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Our 12 year old has recently been diagnosed with ASC. We live in Mid Devon and he goes to the local comprehensive which is trying its best to help. But... I want to know if anyone out there has been through what we have and can save us having to reinvent the wheel every time. Does anyone know what works with this:

 

  • In the last three months he has become violent towards himself and us, lashing out a lot
  • Swearing constantly
  • Massively increased OCD
  • Refusing to go to school a lot
  • Finding more and more things difficult.
  • Wanting to control us more and more, in terms of what we all do as a family (we've got two older girls in late teens)
  • Long tantrums lasting hours.
  • Threatening us with hitting
  • Spitting
  • Stealing money from me

 

It seems like there are layers of this really awful behaviour building up on him and I just want to find a way to bring him back to being himself again. What works? I think it is all because he is finding things more difficult and the OCD has really pushed him over the edge. Should we be more strict, should we do a rule book or something that he can see clearly, should we use sanctions (so far we just take away the Xbox etc as he lost his pocket money for stealing from me). I got in touch with the school counsellor and nurse and it seems everything has been cut back in local services, or would take ages to get referred and get help with.

 

What has anyone else done that really works to gain some limitations on what his behaviour is?

If we sound a bit desperate it's because we are! Sorry for the long post but if anyone can let us know what worked for you then I'd be really grateful. Thanks!

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Hi,

 

I'm afraid I can't really help, just sympathise and tell you I thought you were describing our son. He is almost 15 now. I don't think he has been stealing, but he manipulates things to get what he wants - and he doesn't have OCD - but the rest is the same.

 

He was diagnosed at about 11, and his psychiatrist put him on Risperdal - just .25ml per day. I know a lot of people don't agree with anti psychotics, but this did seem to calm him, just a bit - and helped him sleep. But he has refused to take it since March this year, and he has become a lot more violent since then. Not sure if it's his age (someone told me 15 was the worst aGE) or if was coming off the meds.

 

He is in a normal school, though he moved up a year, and does well academically. But says he is so tired at the end of each day.

 

We also have a younger son (12), and Will is totally horrid to him, and tries to rule the family. I am dreading the summer holidays - Will generally refuses to go out. Will hates my husband, his father, too.

 

I am hoping you get some useful advice which I can follow too.

 

Good luck, Diane

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I can only tolerate risperdal quicklets as the liquid brand sent me psychotic. They really help with my anger and im on 1mg hoping to reduce to 0.5mg soon.

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Hi.

My son was diagnosed at aged 13. The next term he refused to go to school and has not entered the mainstream school since. The local authority refused assessment as said school could meet needs,then a year later they issued a statement naming the same school! The LA now say there is not a suitable school for him in county!

 

My son has major anxiety associated to school and low mood. At school he was high achieving but internalised everything and would have meltdowns at home. His mum in law wishes for the child back who was so compliant. Was that really him? The system has broken him.

 

From what you are saying your son was not a child who swore a lot. He is crying out for help. Has he been seen by child and adolescent health? I do not suggest this for medication. Early intervention will save a lot of heart ache later. What is your son saying? He is not coping in this environment. The school told me they were doing everything to help my son as well. They did nothing. You need to ask your son what will help and agree with your son that is what will happen. Do not let the school change the agreement and do not be fobbed off. Autism is a disability and as such they should be making reasonable adjustments. He is obviously finding the environment overwhelming. He should have a plan from the special educational needs coordinator. If he cannot manage certain lessons then he should not do them. Do not lie to your son saying everything will be all right. He is going into that environment and knows it is not. Ask the school for the educational psychologist to assess his educational needs. His needs are not to do with academic ability so do not let them tell you he does not fit there criteria.

 

At home your child feels safe and needs to let off steam. I have found planning is key. Change can be very difficult and so lots of warning is needed. A visual calendar with what is happening is good. I have found long gone is the day when I can say lets go swimming and we all jump in the car. My son needs to know at least 2 days before. For holidays it is 6 months. Time management skills they also can find difficult. You need to factor this in. Your son may assume you know what he is thinking. I missed a lot because the school nor my son told me about them eg. assemblies.

 

What you also need to do is write to the LA and ask for a statutory assessment of your sons needs. Template on Advisory Centre for Education. They also give telephone advice. The National Autistic Society have a parental advice and support service from other parents. New guidance came out in April and SEN policy will be changing in September. If your son is missing 15 days of schooling a year related to a medical condition (not all at once) they should be looking at putting in a more flexible timetable for him.

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Personally I would start looking at other schools with autism specific bases. Your son also needs to learn social skills which the predominant neurotype takes for granted. Break times can be a night mare without structure, support and a quiet place to retreat. Claire Sainsbury's book Martian in the Playground may help your understanding.

 

 

Anxiety is different for the autistic person. It does not drop off when the cause is gone. It can last days or weeks. A high number suffer from anxiety in comparison to their peers and a high number are bullied.

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In most cases his bad behaviour will be a reaction to some other needs that are not being addressed. Applying sanctions for such behaviour is unlikely to work and in fact is likely to be counterproductive. You probably need a two-part approach. Firstly teach him to recognise and deal with the feelings that lead to this behaviour. Then start identifying his needs and doing what you can to address those.

 

Sounds likely that he is in the wrong school - you should get a statement and start looking around for a more appropriate environment

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Hi ,

 

Re Bed32's post, one thing we did identify was that Will ready hated the school canteen - so we tried to collect him at lunchtime when we could. We are in France, so he often had a 2 hour break, so it was do-able. Just having a break to distress a bit made a big difference to him. He now has a statement, and the authority pays for a taxi so he can still come home, even though his school is now a bit further away.

 

Diane

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If your son is 12 has he just started secondary school?

Is he at a mainstream school?

What are his academic grades like?

What are his social skills like?

If he is refusing school that is for a reason.

 

My son is 13 with ASD and OCD. We went to an educational tribunal in 2011 and moved him to an independent special school for children with an ASD who are cognitively able. He refused school at the Local primary and was out of school for a year.

 

The OCD and increase in OCD will be related to stress and anxiety and that is most likely happening in school. But he will also have his rituals at home too.

 

What we do is we do not let him control us at all. When his OCD is bad he will try to get me to carry out compulsions to reassure him. He will also ask for reassurance alot about whether something is clean or contaminated. We just pass the question back to him "what do you think".

 

We also tell him that OCD is "just a thought" ie. not real, although to the OCD sufferer it is very real indeed.

 

I have found the OCDUK.org website very helpful.

 

I would say take demands off him. There is no point offering rewards or punishments for a medical condition like OCD. The World Health Organisation ranks OCD as one of the 10th most debilitating illnesses there are.

 

Is your son under CAHMS?

 

Have they followed the NHS NICE Guidance and referred him to a Clincial Psychologist for Cognitive Behavioural Therapy? Ideally this should all be included in your son's Statement of SEN. We are seeking CBT, but for it to be delivered in school and at home.

 

I cannot over emphasize how frightening OCD is for a child, nevermind one with an ASD as well.

 

What type of OCD does your son have?

 

The only thing that worked for us [and sometimes even that is not enough], was the move to his current school. However when his OCD is bad his attendance drops, currently at around 60%.

 

And eventhough my son has a Statement we have still had to fight to get CAHMS onboard, and get a referal to ClinPsych, as they kept refusing to accept the referrals from CAHMS and School. They were not following their own NHS NICE Guidance. I contacted Patient Liaision Service and they liaised with ClinPsych and that caused them to change their mind and accept a referral.

 

There is the Maudsley Hospital where they do have specialists in OCD and ASD. So if there are no local services, you can ask your GP to refer you on to the Maudsley.

 

Our son also went through a phase of getting very angry/upset. Hitting me, and also stealing from the supermarket. Clinical Psychology said that it was all to do with low self esteem and struggling due to ASD and OCD. Soon after that he totally refused school for a year, and personally I think he had some kind of breakdown. So it is really important that you take demands off him, and if he is not coping that you get professional help and do not force him to do things he is obviously not coping with - and that might include a reduced timetable in school. He may become too ill/anxious to attend school. What other schooling options do you have in your area?

Edited by Sally44

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Every service has had funds cut back. BUT a Statement of SEN is a legally binding document. So whatever is in the Statement MUST be funded by your local authority and provided in school. That also includes therapy from NHS services.

 

For example, a local secondary school might have a budget of 5 hours per term for an educational psychologist to come and give them advice. If your son's Statement says that the EP must see your son and give advice to school on a termly basis of 5 hours, then the LA must fund that. If a speech therapist report says that your son needs 1 hour a week 1:1 for speech and language and social interaction skills, then the LA must fund it. So it is all about getting professional advice in writing and getting that into the Statement.

 

Currently my LA pay for my son to be at an ASD independent school, and they also pay for a specialist dyslexia teacher too [as he has dyslexia as well as ASD and OCD] for 6 hours a week, and they also fund some overnight stays. My son's school has occupational therapists and speech and language therapists employed on site and they see him nearly every day. The total cost to the LA is around £60K. And the whole point of providing this is so that he is more able as an adult so he can be a productive member of society.

 

Special Educational Needs law is changing. Organisations such as www.ipsea.org.uk can give advice on educational issues and Statements, so can the NAS and an organisation called network81.org. Contact the NAS and see if you have a local group and if they are holding any educational seminars about statements etc.

 

Do not wait for the help to be offered. It never will be. You have to be proactive, and get a Statement for your son and a placement at a school where he can access education, reach his potential and where they can also meet his anxiety and OCD needs.

Edited by Sally44

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