Behaviour Matters

New services

Last month saw the launch of some new service for me. I realised that although my advice on twitter and email is growing sometimes parents need more than words so I have introduced a home visit scheme. This will also be a advocacy service for parents and children coping with Autism. Sometimes it is possible to run out of steam and just be able to face another meeting, another discussion about behaviour or another appointment with GP, EP, CAMHS, OT, SLT, or any other letters you can think of. So I am available to help you with these meetings, help you fight for what is right.

The second new service is to deliver workshops; these will be similar to the training, but shorter and more generic. Some of these will be delivered for specific companies or schools others will be open for anyone to attend (for a small fee). The open workshops will cover one aspect of Autism and give people the opportunity to ask questions at the end about anything. A quick fire Q&A session to help people overcome issues they have or feel unable to cope with. Very relaxed and led by the attendees. Mostly these will be held in Hull or East Yorkshire, as I live here, but if you can arrange a venue and enough people I can go any where.

Both of these new services are to compliment my existing services of training in schools. Schools’ training is a three tiered approach.
1. On over view of Autism so that you are prepared if a child might come into your school, or because staff identify a gap in their knowledge.
2. A specific training course for schools who have children with Autism already or who are expecting one or more to start in the following term/year. This is more specific to schools, education and the difficulties that can be faced by the child.
3. This is more specific. In this level of training I will observe interaction and behaviours of a particular child, then work with teachers and TAs as well as other staff to develop strategies and understanding of this child. The strategies used here may not be suitable for any other child as they will be very individualised, but they should help prevent exclusion and melt downs. Many of the strategies suggested are not a financial burden to the school, most just meant he teacher taking a little more time in planning or classroom management.

The advice I give via twitter and email is still available as it is a quick way to support parents who want help immediately. So don’t stop asking, I’m here to help.

Advertisements

Good morning all, I’m not feeling very positive about life today, but as it is the last Saturday of the month it is all about positivity. I have heard some really positive stories this month, particularly about mainstream schools. This is great. As I keep saying there are some great schools out there that really seem to understand the needs of their pupils.

This month I have heard of two schools that have changed some of their procedures for individual children. These changes have been small but have made a huge difference to the children and their families. I have also heard about a school where the whole staff team have had Autism training, not just the support staff. This makes a big difference to the ethos of the school and ensures more understanding of how to deal with a melt down and how to prevent a meltdown by understanding the behaviour as well as the triggers or signs.

Simple changes can support the development of emotional intelligence for everyone, (some things never stop developing). Along with more emotional intelligence come the readiness to learn, not shallow learning for testing but deep learning with understanding and comprehension and the ability to transfer knowledge.

Let’s keep the wave of positivity moving this month, raise awareness and support everyone to learn something new as well as develop their own emotional intelligence.

Everybody is all right really

Some may say it’s a strange place to start when writing a blog, but Winnie the Pooh’s Little Book of Wisdom has helped me out this morning. I did think of lots of different topics, but when I sat down to write non of them seemed quite right.
So in the words of Winnie the Pooh

“Everybody is all right really. That’s what I think”

I can almost guarantee that some people reading this will disagree, as they may have had a disappointing or frustrating week. I know of other people who are on the whole very negative about everything and everyone, so they will disagree too. But for me I do believe in this statement. Ok some people can be difficult or reluctant to help, but on the whole people are all the same, they may face a situation from a different view point or have a different agenda to you, but does not automatically make them wrong.

We are also very unique and our uniqueness should never be compromised. This is where my passion to understand autism comes from. They should be encouraged to be themselves and society should adapt to meet their individuality. Society has done this in the past, it is more acceptable to be gay, if you have cancer you are not shunned or seen as infectious, the world is changing to accept AIDS, and people with learning disabilities are not locked away in asylums. So society can change if plenty people support it.

Autism is a hidden disability or condition, by trying to make the individual fit into the neurotypical world they are being denied their individuality and their uniqueness and any change in society is being prevented. So I call for parents and friends, teachers and advocates across the country (and the world) to stand up and raise awareness, stop hiding a hidden disability by pretending it is not there or that people can be ‘trained’ to be the same. Celebrate uniqueness and individuality, allow people to be who they are and not what you think they should be. Accept that difference is good and that everybody is all right really.

Assessments in schools

As we are nearing that time when schools are thinking about assessments and exams either as end of year assessments, SATS, GCSEs or even new school applications, I feel the time is right to discuss the need for all this assessment of achievement and how these assessments are done.

You may or may not know that I work in a specialist education setting with young people who have been excluded from main stream education for a variety of reasons. To ensure they get a rounded education and the chance to develop new skills both academic and vocational, some of the learners are provided with off site education in specialist vocational areas. One of the young adults I work with in particular has a diagnosis of Autism and she can become very anxious in new settings, she dopes not always understand that she may have done wrong due to her view of society. She is very quiet and will refuse to talk to people she does not like and she can be aggressive. Usually she is a pleasant young lady with a good sense of humour and she is working towards grade C/D in numeracy and literacy. Direct questioning is not the best way to talk to her, and time limits create high levels of anxiety which can then lead to a meltdown. I am sure that many of you reading this will identify with this young lady.

During her offsite education she finds the noise very uncomfortable and the teachers there seem to have little understanding of her needs and are very concentrated on achievement, and doing assessments in the same way as they have always done them.

Two weeks ago the staff had planned to do their numeracy and IT assessments, the young people had not bee informed about this, and for many of them that was not a problem but for Amelia (not her real name) this was the first in a catalogue of difficulties. As the time came closer for her to be tested her anxiety levels rose, the noise in the room intensified and she became more and more withdrawn. As she was withdrawn the other learners noticed the difference and began to question her, this increased her anxiety levels. I asked the tutor if we could go and sit in a quieter area, I was told to wait a few minutes until she had finished her delivery. So we sat and I talked quietly to Amelia, but could feel the anxiety rise. I told the other learners to stop asking questions and that Amelia was ok. Eventually it was time to do the assessment. We went to a quiet room where the assessor asked direct questions along with asking Amelia to make a choice from about 20 items. Amelia froze and refused to work. The assessor moved onto the next task, Amelia still refused to co-operate, now not speaking and becoming very agitated. The assessor moved onto the next task this time IT. Amelia’s level of anxiety now was very high, and I could see tear building ion her eyes. I stopped the test and explained to the assessor that direct questioning and too much choice was unsuitable for this learner. Amelia broke down as we left the room. She struggled through the remainder of the day with a lot of support and encouragement.

When Amelia left to go home I again discussed the testing methods with the assessor and the tutor, explaining that due to Amelia’s Autism she would never be able to achieve qualifications in this testing environment. It has taken Amelia two weeks to calm down from the experience and return to any form of learning environment.
She is no longer required to be assessed for numeracy, literacy or IT in this environment as we are doing a similar qualification with her in a more controlled and natural way, which suits her learning style and her anxiety. This young lady should never have been put in this situation if the teachers had only listened to me or read her notes.

How many other children are facing such high levels of anxiety due to adults not sufficiently recognising their needs, or making the correct adaptations to assessment? All children who have special needs come with comprehensive notes detailing their abilities and their difficulties. They need to be supported if they are to achieve, and there are many ways of assessing other than testing or questioning.

Parents fight for your child, as I know many of you do. Teachers listen to parents and make suitable arrangements for assessment, as well as looking at the need for assessment. Live should be made easier for these children not easier for adults who can adapt.

Many people have been asking me this week about any tips I have when working or living with people who have a diagnosis of ASC or display symptoms of ASC. So here are my top 10. They are in no particular order and as every person will have different sensory, societal differences not all of the tips will apply to every individual.

1. Avoid eye contact – Eye contact can be very disturbing and even painful for some people with ASC. Try sitting next to them rather than in front of them and do not insist they look at you when you’re talking to them.
2. Avoid waiting time – waiting can lead to anxiety which can lead to a melt down, so allow the child with Autism to go first or be at the front of a queue, this will make life easier for you both.
3. Allow self calming – Many people with ASC will recognise the signs of stress and imminent meltdown, at this point they may leave the room or begin some other self calming actions, allow them to continue with this as it is developing not only self awareness and self control but it may prevent a meltdown or need for restraint.
4. Allow thinking time – Every person will need some time to process information, for people with ASC this time may need to be extended as they process the information given and then process a response.
5. Recognise regression – following a meltdown or period of self calming a person with ASC may regress, this is not uncommon and may support the return to the neurotypical world.
6. Explain, reinforce and check – As any teacher will know these are all important tools for teaching anything. For the individual with ASC these tools are even more important. Transferring skills can be very difficult so you may need to start from the beginning again each time you change topics. Counting cars or counting dinosaurs to the child with ASC are different.
7. Support Routines – All schools follow some sort of timetable. This can be great for the child with ASC although they may become very ‘locked into’ the routine that they find the inevitable changes difficult to cope with, so give as much advance warning of changes as possible.
8. Learning styles – There is a lot of discussion about the relevance of learning styles in the classroom, but the child with ASC will learn very differently to others, so be prepared to have an alternative teaching style. You may find other children benefit from this too.
9. Do not try to make the child fit the school – children with ASC are less likely to fit into the schools plans than other children, be prepared to change your plans to fit the child. Pretending a child can adapt to fit into society will not help raise awareness of a hidden disability. This is about the structure of the school, its policies and procedures. The child with ASC may not be able to eat with other children or use the classroom toilets, so the school may need to make some changes to adapt to these needs.
10. Never forget individuality – Every child is an individual including every child with ASC, this condition will affect every person differently and the strategies you need will change from child to child too.

I have other tips, many of them are mentioned in my regular tweets, and others have been developed to meet the needs of specific children and adults. If you have any questions or would like any advice you can contact me here in comments or on twitter @oagconsultants or you can email me allison@oagconsultants.co.uk

Thanks for reading

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.

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.