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School Refusal, Assessing for ASD, Applying for Statement

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Hello everyone,


I'll try to keep this as brief as I can. I'm new here.


My son is 12yrs old, Yr 7 at school. He always struggled socially at primary school and we struggled with his sleeping and behaviour at home. However, he got through primary school and did well in his SATs (he had an IEP for literacy and was taught in a smaller group for that and also attended a social skills group at times).


For secondary we chose a small independent school that we hoped would suit him. He started there in September and seemed to make a good start, but he would not go back after Oct half term. He turned his sleeping pattern upside down and stayed awake all night and slept in the day. We saw a private psychiatrist while we were waiting for CAMHS referral and her diagnosis was oppositional defiant disorder and although she could see autistic traits she said he was not on the spectrum (this was based on a questionnaire we, as parents, answered and then she input this into a computer program)


We didn't know quite what had gone wrong with the school, but it was a long drive from home, a long day and also they did a lot of sport, so we assumed it had all been too overwhelming for him. We found another independent school that was not far from us and was a more specialist one that catered for children who had struggled with mainstream or had various learning difficulties but were of average ability. My son started here in January. Every morning he would say he needed to sleep more, but we got him to school each day at some time. We stumbled through until the Feb half term, but after this he made it in for 2 days and then wouldn't go again and hasn't been back. The only reason he gives is that the other children ask him where he's been if he is late or misses school. He has also gone back to staying awake at night and sleeping in day (although during Easter hols he did sleep more normally and we were able to go out during day)


We have now had a few appointments with CAMHS - all very slow going. The psychologist is doing an ASD/Aspergers assessment and he is quite convinced that this is what it is - however the diagnosis is going to be tricky because my son mostly answered 'I don't know' (e.g. to questions like 'What makes you happy'). The psychologist is going to continue with the assessment next week. At the moment the psychologist's point of view is that a specialist ASD school is needed and that my son has just found the social demands of secondary school too overwhelming. He also does not agree with the Oppositional Defiant Disorder diagnosis.


We have also involved the EWO - my son barricaded himself in his room when she came to visit! CAMHS are also going to talk to her.


My next step is to apply for a statement. I have seen a suggested letter to use on the Parent Partnership website. The letter looks fairly simple. I'm just not too sure what wording I should use for my reasons for applying for an assessment and how much detail I need to give in this first letter. can anybody give me some advice?


I'm finding this a very difficult and confusing time.





Edited by SharonS

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Not being able to answer questions that involve understanding your own emotions or the emotions of others are typical of being on the spectrum.


Him sleeping during the day and being awake at night could be due to depression, have you told CAHMS about his sleeping pattern?


Those on the spectrum have what they call "the triad of impairments", which is basically significant difficulties in three areas.


Speech and Language [which can appear quite good superficially - until it is properly assessed by a speech therapist using standardised assessments of all his receptive and expressive speech skills. He may take language very literally.


Social communication. This is about friendships, interacting with others, understanding facial expression, body gestures, voice tone, humour such as sarcasm. He may just not get it, and eventhough he may want to have friends, he may have no idea about how to do that. He may struggle to hold a two way conversation. He may have obsessions or interests that he wants to talk about, but not show interest in what others want to tell him.


A need for routine and finding change very upsetting. This could show itself immediately if there is any change to his programme. Or he could be quite good initially at trying new things or places, but get upset if it does not meet his expectations. Or if he expected to go to the cinema, and it had to be re-arranged for another day.


He may have problems with imagination and understanding outcomes and inferring things from the information in front of him. This isn't just about childhood kind of imagination, it is about being able to put yourself into someones place or situation and understand it. Those on the spectrum tend to act very much in the here and now.


Many, if not all, on the spectrum have problems with sensory processing. It can fluctuate between being over or under sensitive to sensory stimuli such as visual, auditory, tactile, vestibular and propriocpetive processing. So they may get distracted with visual stimuli or find it overwhelming, the same with auditory processing - there maybe sounds that upset them eg. vaccum cleaner which makes them cover their ears or leave the room immediately, tactile processing is about how he is with clothes - do tags have to be removed - is he okay to have his hair washed and cut or nails cut - does he like to be hugged or hate it - does he appear to overreact to small cuts he gets when he maybe doesn't complain when he has really hurt himself - vestibular is about balance so can he ride a bike or climb a tree or climb over a gate, proprioception is about knowing where your body parts are so does he trip up or drop/knock things and appear clumsy and can he tie his shoelaces and brush his teeth?


All the above difficulties and lack of understanding obviously causes anxiety because they are fearful and don't know what to expect and often what does happen is not what they expected and they easily get overwhelmed and overloaded with information and sensory processing. This may put him in a permanent anxiety state of fight or flight.


The professionals that typically assess a child for an ASD are a Speech and Language Therapist, Clinical Psychology and Educational Psychologist and Occupational Therapist.


The child may have an ASD, or there maybe other co-morbid difficulties such as Sensory Processing Disorder, Dyspraxia, Specific Learning Difficulty such as Dyslexia, Auditory Processing Disorder,


You say he has been to independent schools. Were you paying those fees or the LA?


You need to get the CAHMS advice on paper in a letter to you so that you can use it as part of the Statementing process. And you need CAHMS to refer you to SALT, Clinical Psychology and Occupational Therapy.


http://www.ipsea.org.uk/What-you-need-to-know/Common-problems.aspx is a link to a website that has alot of information about special educational needs and the law. They have model letters, examples of problems with a solicitor giving answers to the common questions they are asked, outcomes of case law where there have been test cases on certain aspects of SEN law.


http://www.ace-ed.org.uk/advice-about-education-for-parents/Special_Educational_Needs is another website that has alot of information about SEN with model letters and guides on getting the Statement right.


When you request the LA to carry out a statutory assessment you need to give a brief overview of why he needs assessing.


Yours is going to be that he has always struggled in school and has not coped due to suspected ASD which is now being assessed by CAHMS and that he is currently? out of school.


Don't mention Oppositional Defiance Disorder, because that may suggest a behavioural type of school, and as the CAHMS psychiatrist has said, this behaviour maybe due to an autistic spectrum disorder and anxiety rather than ODD. The needs for teaching approaches and therapies for an ASD would be completely different.


It would help if your son had a diagnosis - do you know how long it will be before CAHMS finishes their assessments, and have they referred him for other professionals to assess him?


Your local authority may not have any ASD specific schools. You need to ask them for their list of maintained, non-maintained, approved and independent schools for children with an ASD, and you need to visit them to see if any are suitable ie. they can meet his needs, provide the therapy he needs, have a similar peer group regarding social ability and academic ability.


If you can prove that none of the LA schools can meet his needs, you can ask for an ASD specific indpendent school [which you must have found] and ask for that school as his placement as your parental choice. That will involve you having to go to an educational tribunal because the LA will not want to pay the fees. So be prepared to go to Tribunal about it. That may involve you having to get independent reports and for them to attend the Tribunal as expert witnesses. But you don't need to do any of that until the Proposed Statement stage - when you should post again for relevent information for that stage of the process.

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oh this sounds to similar to one of mine,i have a dd 16 diagnosed with aspergers at the age of 14,a ds who is 14 and was diagnosed asd in feb this year and 11 year old daughter who is looking more like it daily but they have'tried ' to diagnose but wont because they cant see any problems before the age of 3!! but when i say tried she saw paediatrician for about an hour,SALT once ,was observed in classroom by ED phyc for 1/2 hour and that is it!! now we have an autsim specific worker helping us and she is saying go for 2nd opinion,she has seen dd 3 times and the more she sees the more we think 'this is it'.we have a CAMHS app next week but she has already said she wont go which makes it all the more difficult.and she is refusing school ,we manage 2 days a week at a real push,but it is siily things like the autsim worker asked her the other day'if i asked you to write me a story about an adventure you had on mount everest could you do it' her reply ,and i was quite surprised,was'no,ive never been there so how can i write about it'so the literal thinking is def there.

by the way what is EWO?

regards julia

sorry cant offer much advise but can say going through similar with all 3 of my kids so know how you feel,and you just have to take it one day at a time because thats the only thing you can do!

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EWO is education welfare officer.


You need CAHMS consultant to put in writing that your child is not attending school due to anxiety [which is a medical condition], due to their diagnosis of an ASD [which is a medical disorder].


If you get that letter, the first thing is it gets EWO off your back. Secondly it means your child is effectively 'ill', and that means the LA are legally required to provide alternative tuition after 14 days. And it has to be a reasonable level of tution [not sure how many hours - somewhere like IPSEA would know], not just one or two hours a week. And if the child is in the year they have exams, they have to be given even more alternative tuition.


Without that consultants letter you cannot do anything to make the LA provide tuition. And if you push the LA, they usually turn round and call in the EWO. Again, without that medical evidence, the LA assumes the child is off school because they just can't be bothered to go into school and the parents cannot be bothered to make them go.


I don't think a GP's letter would suffice. It might help, but the LA may still state it must be a consultant's letter.

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Thank you for the replies.


Yes, Sally, I have mentioned the sleeping pattern to CAMHS but the psychologist did not think it was depression.


My son definitely struggles with the social side of things. Clothes are a major issue too and there are only a limited number of things he'll wear out of all of his clothes, and certain things have to have tags cut out. Hair cuts too are a problem.


We saw CAMHS psychologist again yesterday and he continued with the ASD assessment. Hopefully he will call me soon to let me know what he thinks and then he is planning to write a report I believe.


Yes, the independent schools he was attending, we were paying for.


The school has now written to ask for a statutory assessment. Should I also put something in writing to the LA?

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If the school have requested the Statutory Assessment, the LA should contact you for your parental opinion. This is usually a form that you complete for a historical background, and current issues.


I would phone the LA to ensure that the school have lodged the appeal, and ask them if they will contact you for information.

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So, we received the ASD diagnosis from CAHMS. They've offered no follow up support and now that they've diagnosed they've closed the case.


The request for Statutory Assessment went to the panel yesterday. Phoned them today to find the outcome and they've turned us down. I think this has a lot to do with the fact that he's hardly attended the current school so they won't have been able to say much about him and also because he's refusing to go to school at the moment and the LA would want him in an education setting for an EP to assess him.

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Turning down parental requests for an assessment for a Statement is common place. It is the LAs way of weeding out those parents that won't take it further.


You have a timescale within which you can lodge an appeal to refuse to assess with SEND. Make sure you lodge the appeal. Often LAs change their mind before the actual tribunal date, and if they don't you just make sure you have submitted all the evidence you have of his needs and the severity of them and how complex they are, and let them decide if the LA should assess him.


The next stage could be they assess and then decide not to issue a Statement! Then off you go again to appeal that decision, and again parents often win that appeal.


It is bizarre for the LA to refuse to assess him when his difficulties are so severe that he has been unable to access education for such a long time. And whose fault is it that no-one has come to the house to see him? They can assess anywhere, and if he is out of school he should be receiving home tuition.


So please do appeal. It is a bit scary, but on the day they are very nice and knowledgeable people who are impartial [for once!] and will actually listen to your concerns and read your evidence. They know what local authorites are like. They are dealing with them all the time. Please don't be put off, or think your child does not need a Statement. He sounds like exactly the kind of child that does need one.


What type of school do you think he could attend?


Is he under Clinical Psychology for the school refusal? If not ask for a referal. He is out of school for a reason. My son was out of school for about a year. We won our Appeal and he is finally at a school that can meet his needs and deal with his anxiety.

Edited by Sally44

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