Review of our attendance at this year’s Autism Show in London

By Linda Scotson, Director of Advance

There is always a wonderful kind of Carnival atmosphere at the Autism Show. Visitors are warm, engaging, curious and the children are out to have fun. We have a stand well positioned a little back from the entrance on the main thoroughfare through so quite soon both families and individuals were surrounding us asking questions, learning about what we do and coming back for more.

Blissfully all four trustees were on our team as well as Ken, Lili, myself and Doran (from whom no one can resist an offered leaflet).

This year I talked at the hub theatre on ‘How to calm the stressed ASD child.’ I recently read a study showing stress (i.e. more oxygen demand than oxygen supply) reduces or kills newly developing brain cells in the areas of learning and memory. This evidence really helps to explain why treating breathing in ASD and so reducing stress has such good results.

My audience had occupied every chair and bit of available floor space and seemed more receptive than ever to the view that breathing plays a truly central role in both the problem and it’s the solution.
Somehow we all still had voices left on our return and already today Monday families we met at the show were already enquiring.

Linda speaking recently at Crawley Treating Autism Support Group

Linda recently spoke at the local Crawley branch of the charity Treating Autism (TA). About ten very interested families attended including a London based TA trustee and two members who travelled up from Worthing.

Linda began by summarising the course of her life trajectory, first as a Mum with a special needs child and later a researcher.

Light-heartedly, she included some humorous anecdotes about Doran’s early years, but also emphasised difficulties Doran faced especially in later childhood. These regressions encouraged Linda to think unorthodoxly on her way to becoming an MPhil/PhD researcher.

This research led her to emphasise the little noticed, subtle but far reaching influence that breathing has upon physiological, and cognitive human development.

Linda clearly presented why abnormal breathing in a special needs child became central to her academic research, which forms the theoretical basis of The Scotson Technique (TST).

All present listened intently as Linda articulated – animatedly at times – the important details of why children with ASD are trapped by their abnormal breathing and why recognising this is crucial, relevant to the understanding and treatment of ASD.

She then explained the effectiveness of the very light gentle pressures of TST and how parents can apply the technique at home after training at our Centre in East Grinstead.

At the Q&A session, which followed, she explained how TST can be successfully delivered even to hyperactive tactile defensive children and how parents report its calming effect.

Linda gained an enthusiastic round of applause when she had finished her talk indicating audience approval. The organiser Jo-Anne presented Linda with a bouquet of flowers after the event. Linda pointed out her aim was to provide the necessary control studies to demonstrate that ASD was a treatable condition that could be clearly explained.

Commenting on Facebook afterwards, Jon Daniels, Trustee of TA remarked that it was a, “Fabulous presentation by Linda today.”

Afterwards, we spoke to the families and discovered that a local support group in East Grinstead meets monthly where Linda can speak in the future.

Review of the Treating Autism Annual Conference 2014

Over the years we have proved how flexible we can be from walking five miles in the snow travelling to work during the wintertime and back or working through the pain barrier when ill. This tenacity however, was put to another test the morning of departure to this year’s Treating Autism weekend conference at Brunel University, London where Advance was exhibiting over the weekend of 8/9th November.

Out of seven of us who offered to volunteer over the weekend, four were forced to cancel at very short notice due to illness after five months preparations. This included the Director Linda Scotson. This left Ken, Lili and Doran as the remaining ones very determined to represent us! After hastily re-arranging our transport we finally arrived to set-up our exhibition display stand.

We had exhibited here before and so we knew we would receive a very warm welcome and sure enough the chair of Treating Autism Anita recognised us in the hotel foyer immediately and struck up conversation and provided advice about setting up. As a further courtesy, she further invited us to the ‘Meet n Greet’ social that Friday evening.

This event was an ice-breaker where delegates, exhibitors and organisers could socialise in relaxed surroundings before the two day conference actually began. It was a chance to catch-up, listening to heart-warming stories and suggest ways our two charities could chart their futures during current financially difficult times.

The next day throughout Saturday, whilst parents attended ASD social and communication workshops, in between these many interested and concerned parents came to our stand. We explained the TST approach and described our HBO facilities, especially our small chamber which is very suitable for ASD individuals as no hood or mask is required. So this is therefore more comfortable experience for these children and young adults.

Ken explained the TST theory despite having a deep voice from a minor throat infection losing most of it with all the enquiries by Saturday evening making conversation at the evening Gala dinner rather difficult.

In the months beforehand Ken & Linda Scotson wrote a specially prepared booklet explaining the TST interpretation of ASD by highlighting the role of breathing in the diagnosis. The TST theory explains that upper chest breathing (which is prominent in ASD) lowers the body’s oxygen levels compromising the internal environment of the gut and creating lowered immunity, thus offering a further viewpoint on how ASD comorbidities may develop.

Lili outlined how TST was put into practise in different ways by the parents so that it complemented their individual lifestyles and the varied ways that Advance could advise in this. She explained performing TST was an enjoyable time for both the parent and child as quality time could be spent interacting together. She also described the possible changes she had personally seen in the children over the years at Advance. Importantly, Lili emphasised that the families may be able to apply for and receive funding from either The Tree of Hope or Caudwell Children charities for TST therapy.

The Saturday evening we attended the superb Gala dinner with its sumptuous meal. Here the families and exhibitors mingled together until quite late talking, laughing and exchanging heart wrenching stories, but all inspired by hope. More importantly, it was an opportunity for the parents to relax and let go of the immense stress they’re usually burdened by. We also bridged a rapport with new families and other exhibitors.
The following Sunday we continued to talk at our stand as a further flux of parents arrived for the lectures on gut/immunity research and dietary advice. Ken attended some of these which allowed us to keep informed of latest research families find interesting and informative.

Alongside all the hardwork at our stand our small team networked extensively. It was great to catch-up with parents and Mums especially the few we have got to know so well as friends.

Sadly, the conference and exhibition with all its warmth and comradeship had to come to an end late on Sunday afternoon and we dismantled our display inspired by so much courage and feeling very dedicated to have helped through our own knowledge and researches we said our goodbyes until the next one is organised.

Lili reflected afterwards, “They were a wonderful group of people, very lovely to be with. We met parents interested in both TST and HBOT. There was a lot of information, but also friendliness and fun similar to the atmosphere we hope we have created at Advance. The event itself was wonderfully well organised by autism mums, all volunteers whose hardwork and dedication shone through.”

Doran pointed out, “Everyone was warm, kind and interesting to talk to. Even the building had a lovely interior which added to the friendliness of the atmosphere.”

Ken added after the weekend, “All of us at Advance would like to extend our warmest thanks to Anita and the rest of the Treating Autism team who devotedly worked tirelessly to organise and execute such a worthwhile, informed and enjoyable event.”

Overall, our initial somewhat creative doggedness in adapting to unforeseen enforced change benefited noticeably with bookings and enquiries calling immediately Monday morning! It gave the three of us a massive sense of satisfaction to have made a difference to Advance’s charitable goals and to help the dedicated ASD families in desperate need.

Please view the rest of our blog to find more information out about TST and HBOT .

We can be contacted at info@advancecentres.com or Tel 01342 311137

http://www.treatbreathinginautism.com

Our Artem

Our little boy was born premature two and a half months earlier than we had expected. He breathed independently himself for just the first 5 minutes of his life despite having an Apgar of 7/7, before being placed in an incubator where he spent the next 2 months at the hospital (the first two weeks were in intensive care). When we eventually left the hospital, the doctor explained that Artem would fall behind “normal” kid’s development in various activities. However, it was just assumed ultimately he’d just develop everything later on like crawling, walking etc, and catch up with his peers gradually…

Everything appeared quite good until he reached 1.5 years old and began to WALK!!! Before that, he crawled a lot, spoke a lot (he is very emotionally expressive) and doctors (we had visited several independent neurologists up to that time) were not be able to see the long-term problem. The only problem the doctors saw was that with his eyes (strabismus). However, when he began to walk independently our understanding came at last! It was not just “lag behind,” but was in fact Spastic Diplegic Cerebral Palsy!

So we started various treatments: massages, nootropics, splints on his legs, etc.

Unfortunately the result of all these procedures and medicines was he became hysterical and a very stressful atmosphere erupted at home that was felt every day. We didn’t know what to do! Artem’s hysterics started to look more like paroxysm. We began to understand that the traditional Russian therapy for kids with CP was not suitable for our little boy. In addition, there was one more noticeable problem: he caught colds much too often (cough, bronchitis, pneumonia) even in the summer months.

However when he was 2.5 years old, after much searching around we began TST and amino acids. The situation immediately began to change! We forgot about the hysterics, the movements of his body began to look more proper and accurate; he learnt to run and sing (at the age of 3); he began to go to kindergarten (for kids with vision problems); he learnt to swim (at the age of 5); he learnt to read, write and count (at the age of 5) and now his speech is more articulate, he asks lots of questions and has become interested in many things: military tactics, cars, professions, countries, and even politics.

He didn’t catch any colds during last winter at all – no coughs, no bronchitis! He can now walk for a long time without ever feeling tired. Our achievements over this summer just gone (aged 6.5) are that he can ride a scooter now and climb stairs without using hands! That he is considerably more stable. His eyes are better than they were 4 years ago: when he was 3 years old, he had about 50% sight with a vision corner of 17 degrees (crossing). Now there is about 100% vision with almost no crossing (about 3 degrees).

And this autumn he began to go to school for preparatory lessons like other children of his age.

Artem’s mother and father. Many thanks for contributing to our blog.

Linda talking about her life’s work at Polly’s Place recently

Polly’s Place feels enchanting as you walk through its open door. With its beige carpeted floors and brightly coloured diverse hung artwork vividly expressing hope for autism and conveying feelings of homeliness superabundantly as the overall decor harbours a soft comforting cosiness the moment you enter.

Orchestrating this wonderfully warm welcome is Mo Wilson, the very friendly and bubbly manager of Polly’s Place who invited us to her intimate monthly coffee mornings held for the parents of people with autism/ASD. It is a setting for these parents to express their feelings, a sanctuary to find some relief from stress shared with others emphatic understanding of all being in the same boat.

Mo has performed TST therapy upon her son over the last two years and experiencing such positive changes prompted her suggestion for Linda to speak about her experiences and her resulting research.

After introductions, Linda began her talk by outlining in her usual light-hearted manner her life story since Doran was born in 1978 and related some humorous anecdotes especially about the early years of Doran’s life and to his more recent triumphs in completing half-marathons. However, she touched upon the severity of Doran’s condition and his later disability problems as he entered his teen years.

This had in turn led to the requirement for her to adopt a maverick position challenging the orthodox consensus by producing an original piece of research into why abnormal breathing was a problem in cerebral palsy. After years of intensively conducting this research Linda realised that the theory was equally applicable to ASD, but with a slightly different slant that would form the output of the lecture she was about to deliver.

Linda presented an engaging and absorbing talk about why abnormal breathing was a subtle comorbidity in autism/ASDs to an audience who listened intently and found themselves enthralled by understanding an alternative viewpoint in contrast to medical consensus. Moving from explaining the importance of stronger breathing and emphasising their dynamic interactions to gut health, immunity and brain development Linda highlighted her postgraduate research at the renowned Institute of Child Health in London.

Linda remarked that, “It is wonderful to bring so many positive encouraging facts to the table of debate in ASD and to such a lovely group of mothers in such an inspiring setting.

“We hope to work closer together to bring TST to Polly’s Place and also mutually promoting each other’s charitable aims.”

After the coffee morning had ended, Mo enthusiastically gave us a personal tour of Polly’s Place passionately explaining the importance of the services it provides.
Many kinds of support are offered to all age groups of ASD individuals. This includes ICT training to provide young adults with essential skills for today’s workplace. The already mentioned art gallery poignantly named Artism displaying their brightly quality masterpieces and clear landscape photography stands out showing Mo’s absolute dedication and care to helping those who need that vital extra support in life.

Finally, there’s the hidden treasure trove of handmade trinkets lovingly crafted by ASD people or their family members for sale in their shop raising much needed funds. If you’re perplexed by seeking gifts for loved ones or decorations for the Christmas tree this festive season then look no further than Polly’s Place craft shop to be pleasantly surprised by the array of options available for that something a little bit different.

Mo reflected afterwards, “I would like to give my sincere thanks to the wonderful Linda Scotson & Ken Kilsby from The Advance Centre for visiting Polly’s Place today.

“Linda delivered a captivating presentation of the amazing TST Breathing Techniques and how they help children and adults on the Autism Spectrum.

“I know from firsthand experience how TST has helped my son Ryan so much!

“I didn’t need any coercing, but the science behind breathing and how it maintains our whole being is fascinating and crucial to health. It really does mean Breath = Life in so many ways.”

Upon departure Mo presented Linda and Ken with two parting hand-made gifts from the shop and Ken couldn’t resist further purchasing some early Christmas decorations!

Many thanks to Mo, her team and the talented people who make Polly’s Place so special!

To see the treasure trove of trinkets and wonderful gifts please see their webpage at:

http://www.theautismtrust.org.uk/collections/all

We will announce further details of future collaboration between our two charities.

In the meantime please view our website about TST for Autism/ASDs at: http://www.treatbreathinginautism.com

Oliver’s TST progress

As you know Oliver is severely autistic with associated learning difficulties. He was just about to turn 21y at the beginning of the programme.

I have now attended the Advance Centre six times over the past 19 months and Oliver continues to build on the progress that he made after the first 2 weeks of starting the programme.

His speech has improved significantly and although it is still difficult to have a social conversation with him it is much easier to discuss stories and things that interest him than before he started the therapy. He is also much more adept at expressing his needs and asserting himself and his opinion about any plans we might be making.

Although Oliver has always shown that he has understood what has been being asked of him his processing time of any requests has improved dramatically and there is no longer the need to repeat requests. His ability to retain the request and to action any errands has also improved significantly.

Oliver is much calmer and his behaviour is more stable. His language has matured and instead of just using learned phrases he is putting his own sentences together as evidenced by the lack of grammar!

All in all great progress.

We are very grateful to Oliver’s Mum for contributing to our blog.

Doran’s recent visit to the Tate Britain Art Gallery

Many of you will know about Doran’s personal achievements as a prospective artist who has overcome severe disability largely due to receiving TST therapy.

However, he had never visited a famous art gallery and so his art tutor had organised a day trip for her class to the Tate Britain in London.

I travelled as his companion as I’ve known him many years with six other students and his tutor. After introductions we all travelled by train to London.

Upon arrival at the Tate Britain, his art tutor suggested he study paintings for inspiration by the early 19^th century famous artists W M Turner and John Constable who themselves painted landscapes like Doran himself. Turner actually did sketch areas surrounding East Grinstead so he had some local relevance to us both.

We spent some two hours where Doran clearly became absorbed and fascinated in the varied displays on show. He showed his understanding particularly of the use of contrasts between light and dark effects.

Doran himself remarked, “Seeing these paintings close-up has made me view how I need to consider my use of texture in my own work,

“Overall I really enjoyed the visit and would like to go again.”

Doran was shown by me and his tutor how many interpretations – such as the historical context – of an artworks meaning could be made and why the artist may have placed a person or object at a particular place such as eye level. Thus, he began to understand the importance of thinking about his audience with his own paintings for his future self-development as an artist.

On the journey home we all discussed and reflected upon our own musings of the various artworks we had seen. Doran chipped in with his own feelings about the awe and amazement of some of the rural scenes he had viewed. We both found the day immensely enjoyable and rewarding and are both looking forward to our next visit to a London art gallery.

Doran is pictured standing next to a Turner painting entitled, “The Bay of Baiae with Apollo and the Sibyl” (year 1823)

Staff member and travelling companion

Ken Kilsby

Theo’s Story

I started to practise The Scotson Technique therapy with Theo 3 years ago. Since 2006 Theo made a huge progress in speech, body posture, strength, head control. When I first met Theo his sitting up position wasn’t very good (he needed support all the time and his head hung down). Now he is sitting up independently and straight with his chin up (head control improved a lot).

Theo also has better arm and hand control and can use his arms and hands to balance himself while sitting. When we started to exercises Theo’s speech wasn’t clear and he could use single words to say something. Theo’s language now is amazing. He speaks clearly with very mature sentences and can have a proper conversation with anyone. Theo makes up his own stories while playing before bedtime and does a very good job with reading simple sentences. He has recently started to be interested in spelling words and using a computer (especially writing letters, diary ect.) The last 3 times we went to East Grinstead Theo came with me on a train. He finds it more adventurous to travel by bus and train than just be driven by car. Theo has become very talkative to other people, he likes to ask questions and remembers well. For example he will ask. “Why do we need a ticket?” or “Why does the ticket inspector have a whistle and does the train stops every time?” or “How was your day today, did you go to work?” Theo is now confident and independent. He is interested in people and their work and is always fascinated by something new. I am very proud of him and so happy to see his improvement it is lovely to work with a child with a personality like Theo.

Grateful thanks to Theo’s Helper for sharing this story.

Dan’s Story

Dan was born 8^th May 2004 a whopping 14 lbs and 4 oz. He was two weeks late. He was blue and took twenty minutes to resuscitate. The medics thought he would not survive. He was on a ventilator but pulled this out himself after five days. He did not cry for two weeks. He was tube fed via his nose. The first six months were very hard work. I would express my milk then feed this through his nose whilst stimulating his suck reflex with my little finger dipped in breast milk. He slept between us so that we could monitor his breathing, be with him and notice when he awoke for a feed. His posture extended back and he was unable to move freely.

We tried many different therapies none of which had a clear idea of why they did what they did. Finally we found The Scotson Technique when Dan was just two years old. Linda’s comprehensive and integrated understanding of the role of the respiratory system made total sense. At last we felt hope that we could support Dans development and change his future.

At first it seemed like magic every time we came to Advance as we changed his exercises we noticed a change in something he would do, a new movement or response. We also noticed this if we had a short gap in therapy and then came back.

Dan is unable to use his hands or legs independently; he does not sit yet or talk. His tone is mainly floppy and goes tight when he makes an effort to move. He had a shallow hip at birth that was made worse by high and low tone. His legs scissored with effort or when he tried to weight bear. However, when he recently had an x-ray, (the first in two years), to see how his hip had progressed. The socket had formed normally. Our main approach to tackling this problem has been the Scotson Technique as we have struggled to conform to any standing frame program as proposed by the physio’s.

What I enjoy most about the approach is the predictable way it progresses development. It is slow going but Daniel is getting stronger in his neck and back, his rib cage is changing shape, his hips and shoulders are widening with an increase of more normal movement in his arms, hands and legs. His oral patterns are maturing according to the speech therapist. His movement is amazing. He wriggles around the floor with such flexibility in his spine. He is now consistently able to lift his head forward off the floor and hold it up for longer periods when upright. He is able to grasp and release things on command. His comprehension has also made a qualitative leap with him showing appreciation of things and choices that are more abstract. He enjoys watching all the children’s programs and shows a good sense of humour. He is a joy to live with. He interacts with his brother and younger sister, obviously enjoying their play.

We feel more committed than ever to this technique and we are grateful to Linda Scotson and the team for all their support and encouragement.

Kavita – A Mother’s Story

Kavita was a beautiful little child, but as she grew and developed, it was clear she had severe learning and behavioural difficulties. We tried many therapies but nothing worked.

At 14 years of age, although Kavita could walk, she had poor balance, her posture was bad and her face lacked normal expression. She couldn’t talk, read or write, she could not understand instructions or respond to any of my requests or do anything much for herself. She also showed violent frustration tantrums and we were becoming desperate, ourselves, with what to do. We loved our daughter but we did not know how to live with her. We had to watch her 24/7 because she always got hurt and could not feel pain.

When Kavita was 15, a friend told us there was a chance that the Scotson Technique might help. We decided it was worth a try. Only when Linda Scotson evaluated Kavita did we begin to see how her breathing could relate to her problems. During the three years we have been involved with the Scotson Therapy, there have been many changes in Kavita: she became more alert and awake, her posture straightened, her balance improved, she stopped walking on her toes and she became able to run. She became calmer and the temper tantrums steadily decreased, until we forgot how terrible they had all been.

She started to listen to instructions and carry out simple requests. She began to want to help us do things about the house. I found I was enjoying her company instead of always being worried about her safety and what disaster she might cause next.

Her communication continues to improve; she recognises friends and familiar places with pleasure. She greets people with a smile and a handshake and shows she wants to join in with what we do.

When Kavita was a child, I had always hoped she would speak, but as the years passed, this seemed an impossible dream. Then almost unbelievably, my silent child began expressing herself in words!

Now she continues to learn new words and because she can communicate and express herself in language, she doesn’t have the same frustration.

We can see that only the Scotson Therapy has changed Kavita and we are thankful to have our child and that she, at last, has a future.