Asperger's Syndrome Community
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Avatar universal

Need MAJOR help for flapping and anxiety

Hi all. My son is now nine years and had finally been dx with aspergers and anxiety disorder. We are having major, major issues with his flapping and stimming. Its getting wotrse as he is getting older and we cant get him any help from OT's etc. Has anyone had this problem and how have they been able to tackle it?
7 Responses
470168 tn?1237474845
Hi, glad you've got some answers (and a diagnosis) finally.
I don't know the Educational Laws in Ireland.  But I would recommend the following.
Get in touch with the National Autistic Society www. nas.org.  They have parent to parent helplines and also Educational Helplines etc.
If there is alot of flapping and stimming going on then he needs to be assessed for Sensory Integration Disorder so that modifications to his environment and sensory breaks etc can be incorporated into school.
By law the Local Educational Authority has to provide services to 'meet his needs'.  And this is a need because without it he cannot access the curriculum at school.  Don't be fobbed off that OT is not an educational need, it is and there is 'case law' to prove it.  Case law is when these issues have been taken to an Educational Tribunal and the parents have won.  
Do they do Statements in Ireland?  If so you want to find out what the process is for getting one.  You usually have to prove that your child has serious and complex issues.  That may mean you have to receive other 'labels/diagnosis' to receive the therapy and get a Statement.  In the UK when you have a Statement you also have access to other Special Needs/Enhanced Schools.  As your son is showing alot of anxiety, it maybe that that type of school may support his needs better.  My son goes to an Enhanced School.  That is mainstream but the school has experience and expertise in autism and aspergers and they have extra staff and funding for this.  My son is in a class of 18 children with one teacher and 3 teaching assistants.  All his day is highly structured, even at playtime he has a TA support him and he also goes to dinner time clubs such as lego, IT, drum club etc.
What is the reason that you are not getting help from the Occupational Therapy department?  Please post back because I am very interested in what you have been told.
If it is a question of waiting lists, I know they can be long.  It took 2 years for my son to be seen under the NHS.  
You can get a private report done.  That report and its advice can be used towards a Statement and the school also has to take into account its findings and recommendations.  You need to find an Occupational Therapist who has experience of Aspergers and Sensory Integration Disorder.  Also try to find one that has experience of Educational Tribunal work.  You don't want one that works within the NHS because they will limit their recommendations according to what they know the NHS provides.  There is a big difference.  Law says they have to meet your childs needs.  Therefore you want a professional who will state what your child needs regardless of whether it is available on the NHS or not.  When it is listed as a need, then by law they have to meet it.  The LEA will argue against it, but if it does get to tribunal you will win.  
I know this sounds like alot of hard work, but it is worth it in the end.  So take one step at a time and start the process.
I have just managed to get my son Speech Therapy once a week from a trained therapies and daily therapy from a TA.  That is more therapy than anyone in his school, or any other parent I have ever met.  I managed that because I proved he needed it.  
In the meantime, if you can find the time to read a book!!!  A very good one on this subject is called Sensory and Perceptual Differences in Autism and Aspergers by Olga Bodgashina.  At the back of the book is a questionnaire that you can complete to get a sensory profile of your child.  This will help you identify which senses are causing him the most problems.  Also OTs can carry out similar type assessments eg. Winn Dunn Sensory Assessment.
If you can't find anyone in Ireland, there are many OTs in the UK who have assessment centres you can go to.  It would involve staying over in a hotel.  If you go to the college of Occupational Therapists you can find private practitioners listed.  I found a very good one called Maggie Williams in the south of the UK.
With help with sensory stuff his anxiety may reduce.  But I would also go to your GP and get in writing the seriousness of his anxiety.  Tell the doctor you need a letter in writing because you are being refused services.  
If the anxiety is so great that he is refusing school that can actually work in your favour.  You just need it in writing.  If the LEA cannot meet a child's needs in a state school then they have to fund a place for your child in a private school.  For example Alderwasley school has people from all over UK/Ireland and Europe.  
Is he on any medication for the anxiety?
What is he like in school and what kind of school is he at presently?
Anyway, please post back with what the specific reasons for not receiving help are.  And I strongly recommend contacting the NAS.  There is also an organisation called IPSEA that give advice/information and can also accompany parents to Educational Tribunals.  Google their name to get their contact details.
Avatar universal
my son liked to spin.  He rarely does it now.  We just used constant reminders not to do it.
I don't know wen (he was probably about 9) it dawned on him that people viewed his spinning as weird - so he stopped doing it.  Self-awareness of behaviors seems to be a critical part of getting them under control - children with Asperger's seem to get these concepts a little later than most.  Have hope -  we really have begun to see some real changes now that he is 10.
Avatar universal
HI Sally, sorry only getting around to replying but you know how it can get!!! You are an inspiration to me, you are so well informed on everything!! My son is in a new school 2 years now and is getting on so much better than before(had to remove him from previous school as he was being SEVERELY bullied) The reason my son is on a waiting list to nowhere is down to numerous factors. 1. We have a DISASTEROUS health care system here. There are parctically no services for special needs children(least of all Autistic kids, the dr's view is that if the child isnt violent, whats the problem?) 2. I disagreed with the health service psychologists dx( in which he said my son "may or may not have aspergers"!!!!) I got a private dx from a very well respected psych and the Nhs here are not one bit pleased about "showing them up" As a matter of fact we were with my sons paed(who we havent seen in a year) and he has refused to accept the private dx!!!! Incidently, when my son was with the Nhs psych, from day one I asked for a multi-team assessment and never got it(dont forget we were with this Nhs psych for almost a year). Now his paed says the reason he wont accept the private dx is that it was done by one person and now they want a multi assessment(done by the ot and pt who work under the paed and psych, like those girls are REALLY going to go against their bosses??) My son isnt on any meds but I restrict his diet and use omega etc(cant bear the thoughts of meds) Where do i go from here???????????
470168 tn?1237474845
Welcome back!!!!
As you are in Ireland, I would strongly suggest the next step is contacting the National Autistic Society.  Go onto their website at www. nas.org.uk.  I am expecting they will much more detail about how things are done (and what they legally should do) in Ireland.  And I would recommend you contact them BEFORE your son undergoes any further testing by NHS or LEA staff.
I am only a parent myself, and try to give advice in the areas I have some experience of.
My response to the doctors view that if the child isn't violent it isn't a problem is:  Aspergers is a medically recognised diagnosis.  As part of that diagnosis children will have difficulties with things like Social Interaction.  That is a medical fact.  So your child should be supported in this area (eg. dinner time clubs, access to the IT room or Library at playtimes - especially as there is a history of bullying).  They also have difficulties with social communication and understanding others and their own emotions.  Therefore, as part of his medical diagnosis, he is not going to be able to go up to a teacher and say "I am finding it really hard to cope in the playground because children are saying/doing things to me".  He can't do that.  He will probably throw a tantrum or start to exhibit alot of anxiety and stress based behaviours.  He probably won't even tell you - but you may get alot of inappropriate behaviour at home eg. hitting other siblings, tantrums, trashing their room etc etc.
Regarding point (2).  I know, I know, I know.  They will deny you access to things and then make you jump through other hoops etc etc.  Unfortunately it all boils down to funding and budgets.  If you prove that your son has Aspergers, and is highly anxious, and has problems with Social Interaction, and probably(?) Sensory Integration Disorder etc etc. That means that 'by law' they have to meet your child's needs.  The more you find and prove through professionals reports stating your child's "needs" and their "recommendations to meet those needs", the more money the NHS and LEA (local education authority) have to set aside for your son.
That is why at this stage I would recommend you contact the NAS.  They have an educational helpline, a parent to parent line, they have also recently started a Tribunal helpline.  So if you need to go to an Educational Tribunal they will help you get the case together and go with you.
Please, please, please don't give up.  Just taking the tortoise attitude of keep plodding along.  Remember everything you do will require them to go the leg work, and you will get results in the end.
Google Semantic Pragmatic Speech Disorder - just to check whether you think your son has this speech disorder.  Many on the spectrum have it and it is a 'speech disorder'.  This means your child should have input from a Speech and Language Therapist, and because it is a disorder that means it is for life - so they can't stop the speech therapy at secondary school (which is what usually happens).  They can't refuse a speech and language therapists assessment on the grounds of his diagnosis, because although children with Aspergers tend to have good expressive speech, they can have huge problems with receptive speech, auditory memory, working memory, comprehension and inference, auditory processing, processing delays etc etc - which will all have a huge impact on his ability to access the curriculum.
So speak with the NAS about what your child's legal rights are in Ireland.
Specifically ask them about his private diagnosis being challenged.
Also ask whether Statements are done in Ireland.  It maybe called a different name, but in the UK if you have a child with special educational needs you can ask the LEA for your child to receive a Statement.  This means that a multi disciplinary team through the NHS and the LEA will assess and do reports on your child - the local authority then decides if they need a statement.  You can also have private reports carried out, and because of the 6 months rule, it is usually in your interest to have any private reports done first.  Then they have to incorporate all your child's needs and the recommendations made by the professionals into the Statement, and the Statement is a legal document that the LEA/school has to adher to.  There is a Code of Practice which gives information about what should be included in the Statement.  Many parents are shocked to find that it does state that the LEA needs to "quantify and specify provision in terms of hours and staffing arrangements".  Therefore it is illegal for a statement to contain a statement like "XXX should have regular access to a Speech and Language Therapist" - it should read "XXX will receive input from a qualified Speech Therapist of 6 hours per term, this equates to weekly sessions of 30 minutes.  During this session the teaching assistant nominated as his key worker will observe the session and will carry out this programme on a daily basis as directed by the Speech Therapist.  In additon to the 6 hours per term, the Speech Therapist will set aside a further 9 hours per term to liaise with teaching staff and parents, take notes and write reports, observe and complete assessments, contribute advice towards Social Interaction strategies and Supports during unstructured freetime, attend/contribute to IEP meetings."  (see the difference????)
470168 tn?1237474845
Part 2:

If your son does have further testing by the NHS/LEA their professionals cannot repeat any tests the private professional used for 6 months. Your paediatrician seems to be suggesting that your private psych has fabricated his report/diagnosis - maybe it would be worth mentioning it to the psych who completed the report that it is not being recognised by your child's paediatrician??
But, again, I cannot over emphasise how important it is at this stage to get in touch with the NAS.  I found have them invaluable in giving me the right advice at the right time.
One thing that I found quite hard to get my head around is that as a parent you are continually told, there isn't the staff, there's no problem, he doesn't need, there are no speech therapists, there is a waiting list of over 2 years etc etc.  By law the school has to meet your child's needs.  If you have the evidence of the need and the recommendations to meet those needs, the LEA has to provide it.  That means they have to buy in that support from outside agencies.  So telling you, or any other parent that their child cannot have something, when they have evidence of that need, is a blatant lie.  That fact that they don't have the staff or the time to do it is irrelevant.  They have to buy it in and the LEA has to fund it.  They may force you to go to a tribunal to prove it.  But again, if you have evidence of the need the tribunal will rule in your favour.  
We recently went to tribunal and got everything we asked for.  My son is still in the LEA enhanced resource school.  By age 10 I will start the process again, because I don't believe my son will cope in any of the secondary schools in our area.  However there is a brilliant private school that has already said he fits their criteria.  So I just have to prove that my son 'needs' that school and that no other school can meet those needs.  That will be a harder case to prove, and the LEA won't want to fork out £38,000 a year in private school fees.  But the way I see it is that any money spent on him now means he will be independent as an adult.  Doing nothing will mean he has to be supported all his life and the cost of that will be even higher.
Good luck, let us know how you get on.
The specialists that typicall see a child would be the Speech and Language Therapist (whose remit is language and social interaction - good to have a private report if you can - especially if you think he has Semantic Pragmatic Speech Disorder), then a Clinical and/or Educational Psychologist, Clinical Paediatrician, - sometimes a Neurologist is involved or a Psychiatrist if there are anxiety/stress/OCD etc or other mental health implications, Occupational Therapist for Sensory Integration Disorder and handwriting (very important if your child cannot write clearly).
470168 tn?1237474845
If you are having alot of anxiety/stress related behaviours that might be down to anxiety/stress about school ie. lessons in the classroom or playtimes.  
From this point on (if you've not done so already), make sure you always put everything in writing and also always get a written response.  So when the doctor says "he doesn't need XXX because of XXX" ask him to put that in writing.  This all evidence that you may later wish to rely on at an Educational Tribunal.  I am sure they would struggle to answer a letter which asked "Why are you now recommending that my son is sent for multi disciplinary team assessments, when that was refused in (date) and why do you not accept the diagnosis of Aspergers given to my son by XXX?"
Out of interest, why are they wanting an assessment by a Physiotherapist?
470168 tn?1237474845
I've just been onto the NAS website.
Go to their website and on the bottom lefthandside click on northern ireland part of the map.
Click on: NAS Services and Supports
Click on: Information and Research Services
"            The Autism Services Directory
"            Near you in Northern Ireland
"            Director of Local Services
"            page image

This brings up all the services in NI.  I know you probably aren't in that area, but they should have the most relevant advice for you.

You can also telephone their helpline for advice about educational issues.
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