School don't see my daughter's difficulties

Hi, I know this is an old thread now but when I read it I saw so many parallels to my family's current situation.  My daughter (9) has not yet been diagnosed and we are fighting to get a referral as the signs are not obvious in school.  Its so good to see others stories and realise I'm not alone and not going mad!! Shame that so many of us have to go through this farce but hopefully we will all get the support we need. xx

The other thing to take up with them is their stereotyping approach to your daughter.

They are obviously reciting from a diagnostic text. Many training packages are based on the Triad of Impairments - which is a diagnostic - what to look for if trying to detect autism. It is not a guide to the everyday lives of people with autism, and in particular misses out things that aren't useful for distinguishing autism from other conditions. Also this approach fails to address sensory issues.

Yes some children will mimic their peers. Others will mimic TV characters. But its not a universal stereotype, nor is it somehow inevitable behaviour. It is a response to anxiety about socialising, rehearsing how to do it when they find it otherwise to difficult. There's a section on this in Attwood's Complete Guide to Asperger's Syndrome p27-28.

But if a child doesn't mimic...... it means nothing at all.

All people on the autistic spectrum are individuals. The manifestations are very variable, as the presence of different characteristics is widely variable from absent to marked, and it also depends on the individual's personality. So what they mean by saying "but is very individual" - they are looking for a stereotypical robot based on some silly reference book!

I've explained the problem about where they get information from, in terms of approved SEN textbooks for teaching.

But the staff in your daughter's school are not there to diagnose, they are there to help!  They are neither qualified nor appropriate persons to suggest they know better than you.

They should liase with you. They should bow to your knowledge of your daughter's needs as a parent. They have absolutely no right, or qualifications to argue the toss with you about what's right for your daughter.

In my view this school is behaving irresponsibly and unprofessionally. 

I would reiterate to NAS (if I haven't bored everyone with this by now) that NAS needs to sort out what information is being supplied to teachers, by talking to the Education Boards about curriculum text books including SEN guides for teachers.

But the teachers in this school are out of order. You are entitled to better than this, by far.

jamaicanbluetaz said:

The reply to my e-mail evidencing that Aspergers children can behave perfectly normally at school - because they are managing themselves (to a point) - but blow up at home through the stress of it all was to list every physical show of anxiety and stress and to report that D does not present any of these but they will "keep monitoring".

Erm, that's why it's called masking, do they not know anything!

http://www.peaknt.com/files/The%20Complete%20Guide%20to%20Aspergers%20Syndrome_Attwood.pdf

“Conversations with parents can examinewhether the child suppresses feelings of confusion and frustration at school but releases such feelings at home. I describe some children with Asperger’s syndrome as being a ‘Dr Jekyll and Mr Hyde’ – an angel at school but a devil at home. This has been described in the literature as masquerading (Carrington and Graham 2001). Unfortunately, a parent may be personally criticized for not being able to manage his or her child with Asperger’s syndrome at home. A teacher reports that the child has exemplary behaviour in class so the behaviour must be due to a defect in how the parents manage the child’s emotions.

It is important that school authorities recognize that children with Asperger’s syndrome can sometimes consciously suppress their feelings at school and wait until they are home to release their anguish on younger siblings and a loving parent. Such children are more confused, frustrated and stressed at school than their body language communicates, and the constrained emotions are eventually expressed and released at home. The cause of the problem is the child not communicating extreme stress at school, and not a parent who does not know how to control his or her child.”

Hotel california said:

The argument here seems to be that the school is not seeing any issues and concluding that none exist and therefore cannot see how or why they should do anything.

My first port of call would be to contact the Ed Psy assigned to your school and ask the question "Is it possible for a child to behave differently in one environment and then display very different behaviours in another?"  Then site the behaviours your child is exhibiting and what you consider the triggers are.  Keep asking "is it possible that.... " type questions.

Once you have a professionals opinion (which from my experience it should support your claim), then approach the school again. 

Good luck

I can't see why a parent ought to ask the Ed Psych a question which already has an established response in highly reputable places.  It's a well-known behaviour.  Commented on by the NAS and Tony Attwood amonst others.  Many Ed Psych's probably need educating on the facts themselves.

The reply to my e-mail evidencing that Aspergers children can behave perfectly normally at school - because they are managing themselves (to a point) - but blow up at home through the stress of it all was to list every physical show of anxiety and stress and to report that D does not present any of these but they will "keep monitoring".  They also said she does not mimick her peers, but is very individual - she mimicks part of the characters from the Disney Channel high school programmes in some circumstances although the head won't be aware of such channel I imagine!!

Anyway, I stewed and grumpfed over this, not really seeing where to go except back to the GP for a referral or advice.

However, this morning the SENCO invited me for a chat and she had prepared 12 "diary sheets" to log D's mood in the morning, after school, comments made about school immediately after school and comments made at other times.  This is an attempt to pin point what it is that is "upsetting D the most".  From the way she spoke with me about how she had come up with the idea, I do not believe this has been passed through the head.  She also said she can hear what is happening in her class so she will be able to marry up negative comments with what she has heard happening.

This is, to me, better than no acknowledgement at all - although this is still not doing what I am requesting.  I have been advised by NAS - who gave me a lovely telephone call to advise where I can go if the school continue not to support - including to the LEA.  The advice was to keep a diary myself to use as evidence rather than quoting from every day events that fly around my head like a second thought process.

I will update with how the diary goes and also how my own diary and requests go once I have some evidence to use.

All of the comments on this discussion are great and I am so glad I have found the community.  Thank you everybody.  I hope this helps others by it's conclusion, but do keep posting.

Many thanks.

Might work, my worry would be what exactly might be his/her standpoint, and how far is any clear idea on this disseminated to educational psychologists? While I've tried to clarify the teachers' and school's perspective on this thread, I've been musing elsewhere about "what is the understanding of autism".  The answer from the Educational Psychologist might not be helpful.

The argument here seems to be that the school is not seeing any issues and concluding that none exist and therefore cannot see how or why they should do anything.

My first port of call would be to contact the Ed Psy assigned to your school and ask the question "Is it possible for a child to behave differently in one environment and then display very different behaviours in another?"  Then site the behaviours your child is exhibiting and what you consider the triggers are.  Keep asking "is it possible that.... " type questions.

Once you have a professionals opinion (which from my experience it should support your claim), then approach the school again. 

Good luck

Where I do think there is a major failing at schools level is the select schools and the fee-paying schools. They can avoid taking on disabled pupils, and parents with money may well be sending children to special schools for children with autism.

You only have to look at the websites for select/private schools to see that for all the bluster and self importance, often all they provide is for dyslexia. They probably manage to avoid taking on pupils with more serious needs.

I would still insist that you have more chance of success (and I agree its not much the way things are going) tackling the Local Education Authority.

The schools are under tight budgets, tight performance objectives that seem to take priority over the experiences of pupils, reorganisations and revisions of procedure.

But more importantly being able to provide good SEN and support to disabled pupils depends on them getting the right information.  Many teachers nowadays have little time to go and find resources for themselves. They may get to go to education conferences and see what the education publishers are offering (unlike autism conferences I wonder if JKP books are on display). But unless they use their own money, or persuade their LEA to change suppliers, they get the teaching resources they are given.

I don't know what teachers are supposed to do when the amount of help in SEN books is so inadequate (bar all the stuff on TEACCH). I've described Hanbury above, and I cannot believe that his expeditions around Fear and Flight really help teachers. And I've explained why NAS guidelines to teachers may not be being taken up.

Teachers are mobbed by criticism, much of it parents who don't think the school is doing enough for their child, disabled or otherwise. It is a difficult environment in which to address an individual disabled child's needs.

Badly run schools do exist, and not necessarily defined by the Government's performance criteria. Bad teachers exist - there do seem to be some awful teachers being let loose. But whose fault is it? There are meant to be watch dogs, and legal criteria in place, but who is pursuing that? - teachers, head-teachers, Governors.....or the Local Education Authority?

Whether you do it politely or aggressively, slapping the teachers around isn't the answer. And clearly the breakdown between parents and schools is a major and recurring issue on this forum........

I only approach schools in a professional way.  I might rant on here but I don't in communications to schools.

It's a shame there are so many teachers and schools not listening, even at a personal level to what parents are telling them about their own children, and behaving in unprofessional ways.

There is no policy that can address that, it's down to teachers believing parents, being willing to listen and doing what they can to help, whatever policies there are.

On another forum, a wonderful teacher posted asking what supports she should put in place for a little autistic boy that was about to start in her class.  She really had the right attitude.  Unfortunately, she was a rare example.

As regards IntenseWorld about my Higher Education background and loyalties, I could take the criticism as a fair point, as yes there are such things as mundane or poor teachers (lots of them), and schools which really do not try.

However IntenseWorld follows with feelings about one school "not turning up to a pre-arranged meeting, ignoring phone messages and emails and telling my highly anxious daughter that they can't help with things they most definitely could help with".

While I'm concerned about Hanbury's approach to this, it is revealing to look at his section on parent's attitudes. While the schools need to be careful not to be patronising, there does need to be an approach that gets both sides talking with productive attitudes.

I think you've got to step back a bit and have a think what effect your angry approach has. Bear in mind teachers get a lot of this, as much for no good reasons as good reasons. If schools looked at better parent involvement there might be ways round this.

With regard to the NAS website text mentioned above: "Classroom and playground: support for children with autistic spectrum disorders", this is good, clear and concise. It is actually offering teachers practical advice, free of background waffle.

So it is doing the job it sets out to do, and it might potentially help schools. But are schoolteachers using it? I doubt it.

For one thing good though the ideas are, and recognising mainstream schools, the text doesn't offer much help how to set this up in conventional classroom environments (whether whole classes or SEN sub-groups). It would work for classrooms with just autistic spectrum kids, but it keeps talking about mainstream.

The problem Hanbury is trying to address is teaching kids in the environment with their peers. NAS is just carrying on like - peers... what are they? If you write a guide on teaching kids with autism in mainstream schools you've got to demonstrate some understanding of the environments in these schools. You also have to work with the teachers.

Similarly with regard to playgrounds, some great ideas here, but they involve staff time. Most schools haven't got the free time to supervises specialist groups of children.

Although it explains things a lot better, including sensory sensitivity, it still hinges on the Triad of Impairments.

My other big concern is the reading list. Having a guide available on a website gives you the opportunity to provide up to date reading lists. With two exceptions most of the texts suggested are more than ten years old. Schools are going to look at this with some real doubt as to the guide's viability.

It is all very well NAS offering advice to teachers but you've got to involve teachers. I think the NAS approach offers something clear, concise and useful, but it renders itself unacceptable to schools, owing to fairly minor issues, but ones NAS needs to address.

I appreciate as a former university lecturer Longman you will have a degree of camaraderie with teaching staff in schools and will therefore want to see their side, however this doesn't change the fact that despite policies and training, there are individual teachers and even cultures within schools of being lethargic and unhelpful.

My eldest daughter's school have been a nightmare, as I said not turning up to a pre-arranged meeting, ignoring phone messages and emails and telling my highly anxious daughter that they can't help with things they most definitely could help with.

I had a look to see what else is around. One that seems popular is "Accessing the Curriculum for Pupils with autistic spectrum disorders - using the TEACCH system to help inclusion" Gary Mesibov & Marie Howley 2003, but this depends on contexts where TEACCH can be used. Another is "Supporting Children with Autism in Mainstream Schools" Seach D, Lloyd, M & Preston M (Questions Publications 2003), which looking at the extracts on line appears to get down to issues quickly, but is aimed at Secondary.

What surprised me about Martin Hanbury's "Educating Pupils with Autistic Spectrum Disorders" 2005, which I mentioned in a previous posting, is that this is recommended by NAS (according to the back cover), and the author is a head teacher in a school for children with autism. That is not a critcism of the content, but I'm trying to see it from the perspective of a teacher picking up a book like this in the hope it will help understand schoolchildren with autism in a classroom.

For a start, explanation of autism is based around the Triad of Impairments, with bits on Mind Blindness and Central Coherence theory, as well as a long intro on the difference between Kanner's and Asperger's Research.

I keep trying to get across to NAS that the triad is a diagnostic tool, not a guide to helping teach children on the spectrum. Yet NAS it appears is recommending this book. I know NAS has lots of good stuff on the website, like education in the classroom and the playground - but are teachers reading it? Teachers will read what they are guided to read, which will tend to come from Education publishers.

Chapter 2 is on "The impact of Autism on Learning"; the impact of what Hanbury calls the three waves: affect of the condition, behaviour arising from this and attitudes arising from this behaviour. The behavioural stuff is about Fear, Flight or Fight, but there is some useful content here (pages 22 to 24 about attitudes to autism by parents, peers and professionals.

The attitudes he ascribes to parents are grief, anger, anxiety, cynicism, optimism, defensiveness, openness, isolationism, and collaboration, and Hanbury recommends fostering attitudes which are at the positive end of the contnuum. But that does lead me to wonder whether that induces the seemingly patronising attitude some teachers show to parents.

Chapter 3 is about sharing positive attitudes towards pupils with autism, which includes "nurturing home-school relationships" p29-31 - good stuff here but it patently isn't happening in most schools.

Chapter 4 is entitled 'Addressing Behavioural Issues in Autism' which includes the bit mentioned in a previous posting about sensory overload, but is mostly around Fear and Flight, and "desensitising" a child (aversion therapy by the sound of it). It is all about changing the child, not changing the system.

Chapter 6 Established and Effective Strategies, is a review of common methods, and Chapter 7 is about sharing good practice. What good practice is that then? I'm not sure I've learnt much from skim reading this book, but I'm not convinced I'd learn any more from reading it in depth. Surely there is better stuff around for helping teachers?

Which gets me back to the point I made earlier. Don't pile on the critism on the teachers. You have to have a go at the Local Education Authority, and the National Curriculum bodies. And NAS, its not enough to put your own ideas on your website if teachers are being told to consult elsewhere. You need to start making sure what is out there is helpful.

IntenseWorld, this is the case with my daughter - she is achieving well.  Reading about your difficulties is making me all the more determined to sort things out this year.

There is one thing I would like to add to this as it's very relevant.

When a child is masking at school, and their academic performance is fine, if not great, this makes things even worse from the point of view of the school recognising there is a problem.  They largely concentrate on reaching targets and performing in school league tables.

My eldest, is very good academically, she has admitted to me that she finds it very difficult to tell staff at school her difficulties and how she is feeling.  I think she has alexithymia which is trouble identifying or recognising feelings.  She has reacted terribly since starting secondary school 2 weeks ago, she has regressed, had meltdowns, become distressed, depressed and even more anxious than she was already.  She is begging me to take her out of school and saying that she has changed from being happy and laughing a lot, to being miserable and stressed (which is true).  She is overwhelmed with both the environment and the expectations, such as homework volume.  She has had socialising problems from within the first few days and the school has not done as much as they should do help her with this.

The school have been really poor at communicating with me, ignoring phone messages and emails, delayed responses, not turning up at a meeting our SW arranged etc.

As she does so well academically, I am concerned that they aren't as interested because of this.  Schools need to recognise that the emotional wellbeing and mental health of a child is even more important than the academics.  Academics are great if they help you achieve the job/career you want and be a highly functioning member of society - but what's the use if you become so mentally unwell from the experience that you end up a hermit who withdraws from society and cannot even apply for a job and you end up costing mental health services for ongoing treatment?

I am about to appeal the LAs refusal to assess my daughter for a statement, and this is a very problematic area when the school fails to recognise the problems, as their input is vital into the statementing process.  They have told me (after much challenging) that she is on SA+ put they have not stated at what point she was put on this, because if it was from the day she started then their SA+ isn't worth toffee.  She has an assistant year head she can go and speak to but this person has told her "there's nothing I can do about that" when she has said some of what's bothering her and has been very ineffectual.  If that is SA+ then I am in no doubt she needs a statement.

I can see both sides, longman, and appreciate the hierarchy of information and evidencing that happens at school.

I have found this

http://www.autism.org.uk/working-with/education/educational-professionals-in-schools/pupils-with-autism-in-your-school/asperger-syndrome-a-schools-guide.aspx which I am going to e-mail the school with in the hope it will help them understand some of what I am trying to get across in order to help my daughter.  No doubt I will get called to the "Head's office" once more.

I will update the thread with what is happening as it happens. 

Which is why it is left to parents to ensure schools are educated in the facts.

So email the SENCo's, heads, individual teachers, the NAS link given above, or print it off and present it face-to-face.

Schools are under pressure yes, but that doesn't absolve them of putting the needs of pupils first.

If a parent was home-educating and the experience was making their child so traumatised social services would soon be stepping in.  So we should not accept schools turning a blind eye to the effect their environment and lack of reasonable adjustments and support is doing to autistic children.

They are probably looking at it, as out of sight out of mind, if they don't have a problem with the child at school then as far as they are concerned that's an easier life for them.

What parents need to get across is this:

• it is attendance at school that is specifically responsible for the child's problems outside of school;

• by ignoring problems arising at home, they are putting a lid on a situation which will explode sooner or later and result in the crisis reaction which in the long run will be worse for the school and very detrimental to their pupil's wellbeing.

I urge everyone to stand their ground with schools on this issue.  Don't give in and don't be fobbed off.  By parents putting pressure on the schools, this will feed higher up the chain and hopefully mean changes that are needed get brought in.

Lobby your council's education department too, find out who the director of education is and hassle them until they do something.  The more parents do this, the more they have to sit up and take notice.

Part of the problem lies with what information schools get.

There are standards and guidelines, mainly at the level of Special Education Needs Coordinators (SENCO) and leadership (head teachers etc.). SENCO are supposed to arrange training for staff, head teachers have a responsibility to ensure the school meets the expectations. Do remember everything is being thrown at schools at the moment, with OFSTED, Government obsession with assessment, and league tables, so it is little wonder the system is at breaking point.

You might think the detail of special education needs is decided at national level, but a lot of it comes down to schools through the local authority, which may be using their own commissioned or modified guidelines.

The information they get on autism, as far as I can see from a glance at some of the guidelines, is worse than useless. For a start most of it is driven by the diagnostic criteria - the Triad of Impairments. So sensory issues, while referred to, come way down at the bottom of the priorities.

A lot of the problem with autism is that the market is flooded with books on it (JKP in principle), and it is very hard to find good advice for schools amonst this lot. But scholols would have to use educational publisher reference books, and some of these are quite dated in their understanding of autism. 

I happen to have a copy of Martin Hanbury's "Educating Pupils with Autistic Spectrum Disorders - A practical guide" (Paul Chapman Publishing 2005) for no other reason than it was in my University bookshop and I wanted to better understand the background support at school level for students coming into university. So I haven't looked at any other books for schools.

Take sensory issues, raised by jamaicanbluetaz in the first posting, I couldn't find anything about ear plugs, but there is a section on sensory overload. This hinges around an illustration pupil called Dan, who is sensitive to the sound of chairs scraping against the floor when the children stand up at the end of class and car alarms going off in the staff car park. The solution is Dan is allowed to leave the class before the others, time being adjusted down as he desensitizes, and when a car alarm goes off Dan will be sent out the room, ostensibly to go and report the problem, but so he can get further from the noise.

I'm not knocking the advice, its just I'm not convinced there's that much understanding of autism in the book. I think parents have to get hold of copies of teacher guide books like this one to find out the teacher's perspective. I'm sure you have every right to ask the school if you can peruse the staff reference texts.

One of the key criteria for successful Special Education Needs Support, in all the guidelines is that "professional and parent should work together".

Countless times I see in this forum schools effectively locking out parents, not being prepared to discuss with parents how their child behaves in class, versus at home. It clearly just isn't happening. I guess parents night and some nominal parent's questionnaires is considered adequate.

However I'm reluctant to put blame or extra obligation on the teachers; they're having overwhelming problems landed on them. There's a chain of command here: head teachers, Governors, Local Education Authority, national education bodies.

Governors are supposed to get genned up on this, I don't think they are. But the real failures often lie with the Local Education Authority - your county council - or whatever. Just as with the Adult Autism Strategy, most of the mess is down to the appalling standards amongst local government civil servants.

That's where parents need to direct their anger and their protests rather than schools.  

I would just like to say my son who is about to be diagnosed with high functioning autism is a little angel at school,the teachers look at me in disbeleif when i tell them how he is at home,he hits,kicks,punches,scratches,screams and it lasts a longtime,children on the spectrum thrive on routine in school,its not the same when they are at home,theres no routine as such.