Behaviour Matters

Archive for January, 2013

Positive about Autism – Jan

This week I asked my fellow tweeters what they would like me to blog about. My favourite suggestion was to tell everyone about the positive aspects of Autism, and there are many.

I will be doing this on the last Saturday of every month so if anyone has any positive stories to tell then let me know.

This week many of the stories will come from my own experiences with both adults and children who are autistic.

First of all there is the lovely little boy I worked with last year. The teachers had just about given up on him and decided that he was impossible to teach. I saw a lot of potential and told his mum that I though he was very clever and had a lot to offer. He is a very loving child who loves cuddles and kisses, his face lights up when he sees someone he knows and likes and he will run over and give them the biggest hug possible. I don’t work with him now, but still stay in touch and now he can read and write. He can do the same level of maths as the rest of his age group. He is just a lovely little boy who is a pleasure to be with.

Next comes the story of another young man I supported. He was 16 when I worked with him. Although non-verbal he was very good at showing you what he wanted or needed, once you understood him. He developed independence skills and was able to make his breakfast and would make tea and coffee for staff if you asked him to. My favourite memories are of him wanting his hair played with, he would come over to me and drop his head so I could play with his hair, he would then stand up and start running through the house literally bouncing off the walls squealing with delight. I am unsure if he ever learnt speech, but he would shout “Ai ee o” when I was not on duty, other staff thought he was shouting my name; his first word at the age of 16. Amazing young man.

Another young lady I currently work with is 15. Very shy, and who rarely speaks to others. I only see her once or twice a week for a few minutes, but again her face lights up when I walk into the room. She smiles and nods her head when I ask if she is ok. She will be sitting exams in the next few months, this though terrifies her, but if I sit with her in the room she will do them and she will succeed.

I could go on but the blog would be too long and people would get fed up reading. But I do have a few more stories to tell you. This is not me but a twitter friend. She has been tweeting over Christmas about her son’s first words. Her tweets made me cry as I could feel the pride and joy in her words as her son started to ask for things using words. Another twitter mum posted a video of her daughter singing and signing a Christmas song, another very proud mum. Finally a mum posted a picture her son had drawn about what Autism feels like for him, it was such a powerful picture. I saved it as well as re-tweeting it.

In my mostly neuro typical world I am constantly amazed and in awe of the people I meet on twitter an in life who constantly overcome difficulties so they can be rewarded by the amazing achievements of their children. Children who may have been abandoned by society or education, who are tossed between different services as if they are a basketball in a fast moving game. These families are amazing and wonderful. When I read your stories my heart fills with joy and they keep me doing what I do. Everyone needs to see the positives.

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Can mainstream education meet the needs of children with Autism

Autism in mainstream schools is becoming quite popular both with parents and schools. Many parents want their child to entre the local mainstream primary school for many reasons
• It is local so makes life a little easier in the mornings
• Their child goes to school with his/her peers
• Socialising is good for the child with autism
• Many parents want to see their child as ‘normal’
• With no diagnosis mainstream is the obvious choice
• School say they understand and parents are content
• Even with a diagnosis schools say they understand as they have had children previously with the condition.
• Schools reassure parents that staff members are trained and if necessary they will bring in more support.

The list will go on, but I am sure if you are an Autism parent you will recognise some of the points above. Some of the feelings and expectations you had before your child started his or her new school.

From many of the stories and experiences I have had over just the past 18 months the reality of a child with Autism in mainstream schools is very different to that promised or expected. I do realise that many schools are excellent and support children extremely well; their training is up to date and relevant and has been delivered with both the needs of the child and the needs of the school in mind. I am also aware that the stories I hear may not be the norm and my experiences are usually at the extreme. Never the less they are real and they are happening in the British education system now.

Taking each point individually.

• It is local so makes life a little easier in the mornings

Where this may be true as any autism parent will tell you mornings are difficult no matter what time you get up or how organised you are. If the child is young they will inevitably lose something (this is partly normal for any child in primary school). They you add in changes in routines due to weather or clocks changing, unusual sleep patterns and uniforms and mornings are busy, being local may remove some stress but having a taxi to collect your child and take them to the school gate can be a blessing.

• Their child goes to school with his/her peers

The child with Autism may not be aware of their peers, so is it important they go to school with them? I know many parents will still want this and I can understand it, but really it should be more about what the child needs.

• Socialising is good for the child with autism

I cannot disagree that socialising is good for all children, but it is important to remember that if your child with Autism is falling behind in their education they will notice and this could have a negative impact on their social skills and their education. Socialising with children of similar ability and who may act in a similar way may have a much more beneficial affect on your child.

• Many parents want to see their child as ‘normal’

This point may be controversial. First there is the question of ‘normal’. Then there is acceptance on the part of the parent. Every parent I speak to loves their child unconditionally; they see the child they have as normal for them. This is all you can ask for.

• With no diagnosis mainstream is the obvious choice

If your child with Autism is your first child and you have no other children to compare them with you may not see that they are different, you enrol them into the local school as this is the most natural thing to do. You may have noticed that your child is a little different to others but you consider this to be individuality. As a parent you have developed strategies that work and assume all parents are doing the same thing.

• School say they understand and parents are content

At the pre-enrolment stage you may discuss your concerns with the teachers, they say that they understand and you believe them, why would you not. This is their job they understand children and know how to cope with them.

• Even with a diagnosis schools say they understand as they have had children previously with the condition.

The school explain that they have had many children with Autism previously and they understand the differences and difficulties they may face. This may be true. You as a parent take this on board and believe they will do the best for your child. You have discussed your concerns and explained your child’s difficulties and the school are happy to accept him/her.

• Schools reassure parents that staff members are trained and if necessary they will bring in more support.

Another controversial point here, based on my experience. The school will accept any child onto the school roll, begin the school year with minimal extra support if any until they get top a point of realisation that they cannot cope, and then get in the extra support. Many parents need to fight for this and it can take a long time, during which time the child is not achieving goals or enjoying school. The long term effects of this can be very negative for parents and children.

In reality, over the last 18 months I have witnessed or hear of children being permanently excluded due to behaviour that teachers cannot cope with (or maybe don’t understand), children being locked in cupboards as a way of coping with behaviour, schools wanting the child to change to fit the school system, children either refusing to use school toilets causing constipation or being sent home in soiled nappies as no one can get close enough to him to change him. I find this all unacceptable. Then while I was writing this I have found a tweet that made me smile and remember the good practice out there. One parent has sent me a tweet saying how excellent the mainstream school her son attends has excelled at welcoming her child even changing the curriculum for him. So there is good practice out there.

So don’t be afraid to shout and complain and fight for your child, it is a difficult road, but very worthwhile. You may be tired and feel you are fighting a loosing battle but you need to keep fighting. There are many others out there fighting the same fight, both parents and organisations.

Nobody knows Everything.

Everybody knows at least one person who thinks they know all they need to know. They will either be the person who wont listen or take your advice as their don’t need to know what you are telling them or they already know what you are telling them (or at the very least think they do).

I hope I am not one of those people. Although I know that I can become a bit obsessive in my thinking. I like to be in control but I am willing to listen to other people and change my thoughts if I need to. Why am I talking about this today? Well this week I have had at least two instances that have made me question myself. The first was an incident at work. I was talking to a colleague about the plans for a session and I made a few suggestions on changes I thought would work. These were not taken on board and the session did run to any sort of order or result in any achievements. I wonder if my suggestions had been considered if the results would have been more positive.

The second was incident was related to one of my tweets; Flapping or ‘stimming’ is a necessary part of daily life for some children; do not try to stop it. This tweet became the topic for a 3 day long argument. Maybe I was wrong in the information given, but I don’t think so.

The argument was that as children grow up their stimming may be the instigator of bullying and so stimming should be prevented or the child should only be allowed to stim at home and only then within certain boundaries. I can see this point of view, but the tweet did say that “’stimming’ is a necessary part of daily life for some children”. If the child is able to understand the concept that stimming may result in bullying then they could possibly be able to control it. As Autism is a spectrum disorder every child is different, some children will not see the connection, never understand the connection or ever be able to control their stimming.

Another point was made that society will never change its attitude to Autism so the children must learn to fit into society. I would like to think that society can change, but by hiding the already hidden disability by pretending to be ‘normal’ then society will not see the problems and will never accept them.

Every person I have ever met has some sort of habit or sign of unease; it may be biting nails or chewing the inside of their lip, stuttering, inability to stand or sit still, talking too fast, swearing, or doodling. None of these are seen as socially unacceptable and I cannot see much of a difference between these and stimming.

As I said I don’t presume to know everything, but I do think that I can back up any of the statements I make on twitter or in person. Autism is a complex condition that can never be understood by one person. As a parent you know your child, as a teacher you may know a number of individual children. Every one id different and will need different levels of support at different times of the day. So allow your child to be individual, teach them what is important to their level of understanding, and enjoy the differences. As Wendy Lawson said it’s a differbility not a disability.

More infomration please

following on from my last post I have had some great feedback on what teachers want to know and what parents want teachers to know about autism. here are a few of the ideas mentioned
teachers and parents to work together
more communication between home and school
teachers to understand that a melt down is not deliberate or beign naughty
parents to inform teacher of sensory triggers and needs
understand how to aleviate triggers and overloading senses
teachers to be aware of signs of distress and act accordingly
understand that stimming is natural and should not be discouraged
avoid non literal language (sarcasm, colloquialisms)
provide support with changes to routines
see the benefits of autism in the classroom

there are lots of others, but please keep them coming in, the more I can know the more I can help.

Thanks for the response so far

2013 – Aims and Ambitions

Some of your reading this will have a vague idea of my current plans and my current status, others will not.

I have been asking the same on Twitter and Face book for a couple of weeks now; what do teachers want to know about Autism and what do parents want teachers to know about Autism?  I have an idea of what people want to know, but really want to understand your needs more fully.  I will then use the information to develop training and a second book to help teachers and children with autism in mainstream schools.

Why do I want to do this?  I have been reading papers and reports and have uncovered some scary statistics related to children with Autism and exclusion, teachers feeling unprepared and unable to teach children with autism, and the inevitable cuts in funding will not make anything easier for the children, parents or teachers.  I also have evidence in my own work of the difficulties schools face and how they deal with those problems.  In one paper statistics state that 1 in 86 children have special educational needs that are related to autism spectrum disorder.  I work in a small unit of 24 children (all permanently excluded from school) of those 24 I estimate that 6 of them either are or could be diagnosed with ASD.  That brings the ratio to 1:4 and shows that mainstream education is not prepared for the behaviours or equipped well enough to support children with ASD.

My aim is to develop a training package to accompany my second book.  The training will be designed specifically for school staff and specifically aimed to help them support and understand Autism.  Currently 72% of schools are dissatisfied with the extent of their teacher’s training in Autism, and I in 5 schools with children with autism or Asperger syndrome have no teachers with autism specific training at all.  I am sure that as parents this may not surprise you but will cause concern.

I will approach schools; primary and secondary, as well as local authorities’ across the country with my training.  I will armed with information found in the Department for Education, Support and aspiration: A new approach to special educational needs and disability. March 2011 (published in Dec 2012) along with information from other research papers and your comments.  I will start try and turn the tide on understanding Autism in Education.

If you would like more information or think the teachers in your child’s school would like to be involved then contact me at allison@oagconsultants.co.uk

Lets make things better.