Anonymous mum talks mainstream

We've now been doing ABA/VB for five years. The LA wanted us to take a special school route, from nursery onwards. All professional advisors, portage, paediatrician, SLT advised against ABA.

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But we were not to be put off and from the beginning the impact of ABA was dramatic; I felt like the scales fell off my son's eyes and his motivation to explore and learn started to grow and grow. I do not believe that with an eclectic/special school route he would have had any shot at living independently - which is still my ultimate goal and I feel is achievable. ABA has helped build him social motivation, so he learns from his peers as well as from his teachers.

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He is doing fantastically well at mainstream school, We now do our ABA after school, and our shadow occasionally visits the school to swap tips with his LSA. The school and SLT have been very open and it has been a great working relationship. We are working together as a team and swapping ideas rather than it being "us" and "them". 

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More importantly, my boy is happy and enjoys life to the full. ABA, in the form of VB, has always been fun for him and I have never had to stop to consider whether it is the right thing for him. I am so glad that we made this choice, at great cost - financially, logistically and, at times, emotionally - and it makes me angry that we were advised against it for some very misguided reasons. Had I followed official advice and not explored things for myself, my boy would have missed out - at great cost not only to him and his family, but also to the State in terms of greater care costs further down the line. It's not fair that families who are less well-off or who decide to follow mainsteam advice are denied this effective early intervention on the basis of misguided ideology and the silo-ed, short-termed nature of budget planning.

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Mark and Ruth

Mark has always liked his tutors, but there was a definite favourite. Her name is Ruth.

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If we told Mark that Ruth was coming over, his face would light up, and he would go and wait by the door. She would arrive bearing exciting things found in pound shops and prepared the night before. Jelly for messy play, dough made from rice or potato flour for messy play, various kinds of beans and rice and rice flour for more messy play. You might guess that Mark is a tactile sensory seeker, and messy play is about the most exciting thing you can do indoors for him. Surgical gloves for filling with water and popping, strings of plastic beads for fiddling with… there was always something exciting to look forward too. Mark loved variety, so the anticipation was a big part of the fun.

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As the key turned in the lock, he would start to bounce on the spot and flap and giggle with excitement. And Ruth would have to take care about opening the door, and getting her coat off. She always spoke to him in a normal voice, using normal words as she would anyone else. And she was always full of fun and joy, as well as always having a carefully-prepared-in-advance plan about the sequence of fun, and the learning cleverly weaved into it.

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Ruth knew exactly how to keep Mark busy, and happy as she prepared her materials, and then the fun really started… and he learnt so much – to sign the Makaton sign for jelly, rice, beans, potato, glove, water, all the colours, some numbers, loads of animals and many many other things; to match words, and words to pictures, to do all sorts of things sitting among various tubs of goo on the floor, completely enthralled. Or in between being tickled or blowing bubbles or having a piggy back... skipping about in the park, and making chalk marks on the pavement.

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Once a week he would go to a music class that he loved – he loves music and dancing to it. He also went to a street dance class

that he loved. Always accompanied by a tutor, who enabled him to participate. And then who faded their intervention as appropriate. Other children were often invited around to play, and a tutor would support this social interaction. There were play sessions at school with his classmates, which he loved. He had a particular friend in school. All of this social interaction was part of his ABA programme – he was supported to have friends and to participate socially.

 

Mark has been on an ABA programme since he was four. That is what his ABA programme looked like. Verbal behaviour, natural environment teaching. Ruth was a highly trained and very able tutor. We never used time out, or any kind of aversive. Nobody has ever suggested that we should. ABA is all about avoiding the antecedents to behaviour by organising the environment carefully and keeping the child so busy and happy that they don’t remember to act out. It is also the most effective way to teach a child.

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Mark spent some time in his local mainstream school (with ABA tutors), and some time at home. He now goes to his ABA school with considerable enthusiasm every morning, and arrives home beaming and full of joy about the day he has had.

 

Life isn’t always easy. There have been times when Mark has been unwell, and his only means of letting us know was with behaviour that to some would look challenging, but was clearly an expression of distress. The ABA consultant supported us in finding out what might be the issue through a doctor, dentist, nutritionist, occupational therapist – whatever the issue could be. There was occupational therapy input from a neurologically trained OT, and speech therapy input from a speech therapist. And great cooperation between all of the professionals involved.

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I make no apologies for the fact that my son is on an ABA programme. He has always loved it. And it has worked very well for him. Behaviourism these days is highly sophisticated, multi-layered, with all sorts of checks and balances built in. When tutors work they are always assessing from his responses how best to proceed next in such a way as to ensure that he stays engaged.

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There is nothing coercive about it. Enticement would be a better descriptor. It is applied science at its best… all about engaging a child through their interests and preferred activities, and enthusiasm, and keeping the learning happening.

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Mark can now communicate all of his needs through Makaton, and using some PECS – he is familiar with over 200 Makaton signs and uses over 200 PECS symbols. There are countless functional living skills he has learned, and some early literacy and numeracy skills – all through his ABA programme.

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And just in case you haven’t noticed, I adore my son. I would never let anyone do anything to him that I thought could be remotely harmful.

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That the science of ABA has evolved through a dark period speaks to the truth about pretty much every human experience. Until the 1980s in the UK, neurotypical children were caned in school – for those of you in the US that means that their teachers could hit them very hard on their backsides with a big stick in front of their peers. That would traumatise anyone. I remember being sat in class in primary school and suddenly being whacked on the back by a big burly man (teacher), and really not being sure why I was being whacked on the back, or having a lump of chalk thrown at me… and it all passed for neurotypical education. It was crap. No ABA consultant in sight. It doesn’t happen today.

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I hear that some questionable practices still carry on in some parts of the world. I don’t think that you can tar all behaviourists with that brush.

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Bringing my son back: ABA and regressive autism

I suppose George was about 20 months old when we first started to notice a change in his personality. Up until then he seemed like any other child. He met all his milestones and seemed happy and content. He was a little slower to speak, but that was put down to his glue ear and he still sat comfortably within the normal range of his friends. Just like his elder brother, he enjoyed the happy lifestyle of a kid growing up in London at the time – mornings spent at toddler groups, baby music classes, children’s farms and friends' houses and afternoons spent in the park where he loved to play with a football and sit on the swings.

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Then things slowly began to change. Whenever we left the house he would refuse to get out of the buggy. He would put his hands over his ears and scream and try to grab your hand and take you to the door.  He couldn’t tolerate going to any of the places he used to love and every day activities such as swimming or going to the supermarket or getting a haircut became impossible.  We tried to check how his glue ear was progressing but he refused to cooperate with the tests and after a couple of tries it was concluded that he was untestable.  His digestive system seemed in a bad way too

and he seemed constantly ill.  He seemed happy only when at home watching the same video again and again as often as we would let him and running crashing into the sofa.  He would alternate between seeming either agitated or exhausted,never really settling in a happy state of play.  

 

Around his second birthday the regression started to speed up.  He lost all his language and interaction and spent much of his time doing the same puzzle again and again or lying on the floor pushing a train backwards and forwards slowly just in front of his face, carefully studying the turning

wheels.  He could no longer kick a football or climb easily up and down stairs.  I raised my concerns with a local paediatrician who suggested we wait

and see and meet again in 6 months. A second opinion with a paediatrician who specialised in early diagnosis confirmed what we suspected – that George was on the Autistic Spectrum and that was that.  There was no clear path forwards, no person to turn to for help, no plan to help him, no proven treatment.  There was nothing available on the NHS other than 6 weeks of speech therapy but we were on the waiting list

and it could take months.  My lovely little boy was fading away in front of our eyes and there did not seem to be any tried and tested route to getting him back. In fact every expert we consulted seemed to disagree with the previous one about how effective different treatment options were.

 

With the help of a local doctor, we put him on a gluten and dairy free diet and treated his chronic intestinal fungal infection.  We found a speech therapist and she came to the house and gave us some useful advice, but this still did not feel like enough. I started to do some research

and contacted a good friend of mine who also had two boys on the spectrum.  She said that I needed to find a way to interact with him again, to communicate with him and teach him,if he was ever to escape from the isolation of his own little world.  As luck would have it, the London Early Autism Project LEAP was just opening in London, just around the corner from where we used to live.  They were helping parents set up Applied Behaviour Analysis (ABA) programmes for their children.  We needed to recruit therapists and set up a programme and they would oversee it.  The only problem was that the programme had to be intensive (35 hours per week) and it was going to cost thousands of pounds.

 

LEAP explained that Applied Behaviour Analysis is a method of teaching children with Autism that was first developed in the USA by Ivar Lovaas. The research seemed to show it was effective.  Whatever studies seemed to show about different techniques, one thing was clear – the earlier the intervention was tried the better the outcomes.  So we set up a programme and were up and running in a couple of weeks.  I didn’t really understand how it worked at the time, but research since has shed some light onto how different children learn and hence why ABA may be necessary for Autistic children to learn.

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Typically developing children when presented with either a face or an object will usually focus on the person and pay attention to them. They can also filter out background noise to concentrate on human speech. Once focussed on the person and what they say, they have a desire to copy them and learn by imitation.  Their brains then reward them for this behaviour with feel good chemicals and this can be further reinforced by the adult giving them attention.  In other words they pick up language, social skills and behaviour from observing and copying those around them and enjoy

doing so. 

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George, in common with most Autistic children could not and did not learn by imitation.  Firstly, the person in front of him was no more or less interesting than any other object in the room.  He also struggled to filter out speech over background noise (adults on the spectrum equate this to trying to understand Shakespeare from the other side of the room with the TV on).  He had no desire to copy what anyone was doing or saying and he seemed to get no pleasure from doing so if prompted.  In order to progress, he first had to learn how to learn. In common with many ABA programmes, this is what we set out to address.  Firstly he was taught to watch what the therapist was doing, to pay attention and to copy it.  Then everything that he needed to learn was broken down into very small tasks (known as discrete trials) and rewards were given such as a spinning toy or a treat to eat.   Each week we would develop a plan of what was going to be worked on by the ABA therapists, backed up with speech therapy and input from the rest of the family.

 

George hated the sessions at first.  Gradually over the weeks he started to enjoy working and learning. He also enjoyed being able to communicate again.  It was so much easier for him to be able to communicate “drink please” or to point to something he wanted rather than getting upset and throwing a tantrum when I couldn’t guess what he needed.  We slowly worked on the areas where he struggled – looking, copying, speaking, pointing, turn taking, queuing, sharing, cooperating, and so on.

 

I was also concerned that we address George's sensory issues.  For whatever reason, his senses seemed to be over or under sensitive.  He found noises very loud and frequently covered his ears with his hands.  He was not getting enough feedback from his limbs and was constantly bumping into

things to get feedback.  At school or the park he would run into people or objects – anything to anchor his body in space.  His skin was very sensitive and getting his hair cut was very painful and stressful for him and he could not tolerate food with different textures.  Even going to the beach was difficult.  He could not cope with the feel of sand on his feet and if his clothes got wet, they had to come off immediately. The waiting list for Occupational Therapy on the NHS in my area was two years long so once again we had to get the money together to pay for private therapy.  George loved these sessions and they made such a difference to him. 

 

After two years of intensive therapy, George was able to take up a place at a local school specialising in teaching kids with speech and language disorders. Thanks to speech and language therapy, occupational therapy and ABA he was able to sit in a classroom and be taught.  It wasn’t always a smooth ride, but with a lot of patience and skill he continued to make progress.  By the age of about 7 we had our first proper two way conversation for 5 years – a real milestone. Just chatting about Thomas the tank engine in the car – so simple and yet so significant.

 

That was nearly 10 years ago and how things have changed. George still has some wonderful autistic traits.  He gets very absorbed by his hobbies: making animations, running his Doctor Who fan website which he built from scratch ( http://www.rottentardises.com/)

and developing video games. He has an extraordinary memory for facts. He is kind and totally honest.  Some would say to a fault, but those who know

him love it.   One of his Christmas thank you letters stated “thanks for the two DVDs, the first one was great but the second one really sucked”. 

 

George has done his GCSEs and is now at a local college studying IT.  In many respects his day is just like that of any other teenager, getting up, cooking his own breakfast, catching the bus to college and going to the cinema, gym or out for burgers with his friends; and yet he is not just any other teenager.  Each skill, everything he does has had to be carefully and patiently learnt. It has to be studied, practised, rehearsed and generalised. For example, getting on the bus at a bus stop - how to tell if the person at the bus stop in front of you is going to board that bus or is waiting for a different number, how to interact with the driver, where to sit – on your own if there is a spare seat or next to someone if there is not and so on

and so on. Subtle social cues and conventions that need to observed if not too offend.

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I admire my boy so much for what he has achieved.  We were so lucky.  Lucky to have such a wonderful kid and lucky to be in a position to give him so much early help, lucky that ABA got him ready for school, lucky that he was in a school where he could continue to thrive, lucky to have a supportive family and friends. The early interventions were expensive, but I truly believe that the cost of a lifetime of care far outweighs the cost of effective and timely intensive early therapies such as ABA.  Without these early interventions he would not have been able to function in school and would not have continued to progress so much. There is both a significant financial cost as well as a human cost of not providing this intensive early therapy for everyone.   

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George is now working hard for his qualifications and I have no doubt that he will be able to take his place in society, to live and work independently and have a happy productive life.   He is a wonderful young man and I am really proud of him. He has managed to hold onto so much that is positive about his Autism while at the same time working to overcome so many of the difficulties which made it disabling. It has been quite a journey – but his success serves as a constant reminder that nothing that is truly worth having is ever easy.

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Two weeks of #ABA, aggression all but gone - a parent tells why she believes in ABA for all!

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My fight for ABA therapy started when my son had been placed in SEN school for 2 yrs and still hadn't made any progress. He was non verbal, headbanging, violently aggressive, smearing faeces around the bedroom most nights and was violently aggressive. He stopped waving bye at 10 mth old and couldn't imitate.

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My partner and I was desperate so we put him in an ABA school and the progress was astounding. I've kept a diary about his progress from when he first started aba therapy and looking back you see how powerful ABA therapy really is. Within 2 weeks aggressive behaviour was down to a minimum level, within a month he waved bye for the first time, 2 months sitting on the potty independently and making sounds because he was in the early progress of learning to talk, also using head gestures for yes and no. The list goes on and on.

 

ABA therapy should be used to teach autistic children, there should be no questions about it. You shouldn't have to fight expensive tribunal processes to get your child the right to an education he or she deserves it should be given. If they spent the money on ABA schools instead of overpaid judges, solicitors and education officers then these schools would be affordable and better use of tax payers money. But instead they mess around playing at it and wonder why they are then forking out £3000 a week for residential provision. Something needs to change and it needs to be done now!!!!!

 

After spending a fortune in court we lost and we're still fighting for ABA!.....

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The Higher Functioning Experience - ABA rejected in school

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No less difficult with a higher functioning child, another moving testimonial of a mum's fight for ABA and a decent education for her boy.

 

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"My son has HFA (High Functioning Autism) and had developed short 3 word sentences at age 3.5 yr old, but no conversation and his statements were rarely uttered in context to the situation. He had a considerable number of interfering ritualistic behaviours and poor play skills. He also appeared to be ADHD and had no sense of danger. As an infant he missed developmental milestones such as fear of strangers.  Indeed, he has never developed any real sense of danger and my husband and I are constantly on our guard in public.  He would regularly accost strangers in public, eat their food and hold their hands. Running was his favourite activity and he would run without ever looking back into streets or wherever his interest led him and without a backward glance.  We took him to the UK paediatrician (via GP services) who then referred us on to SLT services, with another 3 month wait.  The paediatrician did not tell us he suspected our son had ASD (as he later told us he had) and measured his head circumference as being in the 2nd percentile, which was totally erroneous.  We left the UK for a year long sabbatical. While on sabbatical his issues became worse and I was unable to continue my work or have anyone help with childcare due to his unpredictable behaviour.  We pursued a private assessment and then examined what possible treatment methods could be used.

 

"As both of us parents are highly experienced biomedical neuroscientists we are in a unique position to consider all the possibilities.  It was clear that considerable evidence for ABA methods existed and that these were well established in the effective treatment for ASD. Upon our return to the UK, we immediately set up a home based ABA program with a BCBA accredited consultant. Our son has made rapid progress and he has demonstrated he is able to learn under the right motivating conditions. In contrast at school (he is now in reception), the teachers have difficulty controlling his behaviour and are now asking for additional resources from the LA to manage him while refusing for my privately paid ABA tutor (who has a Masters in Educational Psychology) to come to the school and shadow him. We feel completely frustrated in our attempts to get our son treated adequately (for safety and socialisation) as the teachers and LA are more concerned about keeping one another happy.  Sadly, many schools are taking a similar attitude and are closing their minds and their doors to a much need intervention method. "

 

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Why I am passionate about ABA - a mum's moving testimonial

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Most parents take for granted that toddlers will pick up functional skills as part of their development, mainly through incidental learning. What happens when your child still does not talk at 5? He cannot ask for anything nor tell you how he is feeling nor listens to you reading stories or engage in games, but sits and spins car wheels, pushes same buttons on his electronic toy, desires no food or drink nor hugs & cuddles and requires no interaction with anyone and tantrums when putting on shoes, to go out, when TV goes off, when sitting to eat? The list was endless and despair set in because autism trapped him in a world where I had no place or understanding, Who was the lost one?

 

ABA saved my sanity and explains my passion about it. His progress was swift. Within a few weeks of a part-time 12 hr/week ABA-VB programme, he had 10 single words and 3 months later he had 80!  My spirits lift, my hopes awaken, my sadness abates, I cried with joy that he is so bright and he can learn. He was languishing in an LA eclectic autism school where at the end of 2 yrs there, he had 5 PECS pictures & no speech. An SEN appeal decision placed him in an ABA school.  He is now 14, still has autism & SEN but he talks, reads, writes, does maths, albeit at 8 yr old level but hey give him a chance, he did lose 6 crucial developmental yrs. What is the hurry? There lies the mystery, ABA critics say that we take away the essence of the child when we control what he should be achieving. Untrue! My son retains his essence because he is learning to his potential with ABA . Another anti-ABA sentiment is that our children become robotic, I rather that than a dysfunctional child that society will ignore and shun as an adult with no skills whatsoever. He has a way to go yet and I do not give up on the aspirations of more recovery so that we can enjoy a life lime together.    

 

Support this campaign and invite others to read our testimonies because ABA can serve to change your life and that of your child and should be made available to those who seek it.

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My ABA story

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I have a son, R, aged 16 years who has been following an ABA programme which we started just before he was 3 years old. No ‘recovery’ there, then!

 

R has autism and severe learning disability, and whilst this diagnosis has not changed, ABA has been a life-saver for him and our family. As an infant, he was regressing rapidly, rather than making progress , and he had very severe behaviour problems, no language or language comprehension at all, and no other means of communication. The professionals we came across in our efforts to help him – speech and language therapists, educational psychologists, play therapists, paediatrician, health visitor, GP – had no idea how to even begin to help him. Everyone appeared to assume R had knowledge or understanding which he just didn’t – and then were at a loss when he failed to respond to their approaches, and regressed further.

 

So we started one of the first home ABA programmes to set up in the North of the country. I joined Peach, got in touch with other families, and found an American consultant who was visiting other families in my area at that time, who was really excellent. Even on the first day the feelings of relief were huge – here was an approach that assumed nothing and was tailored in minute detail to the individual and how he was responding to potential reinforcers at that moment.

 

Little by little, with small steps forward, then large steps backward, then small steps forward again, we have slowly built up my son’s communication and functional skills. We have been able to live together as a family (if a rather unusual one!) which we feel would otherwise have been impossible. He has been able to enjoy outdoor activities and holidays with us and is a keen walker. This is the boy, who, on the ¼ of a mile walk to nursery, used to throw himself screaming to the ground 25 times or more. He has learned to swim, ride a bike, orienteer with a shadow; he is learning to ski, he is toilet trained and has basic self-help skills like washing and dressing, with some supervision; he has learned reading and writing and simple arithmetic including the use of money. He communicates with voice but his speech is often poor and disordered. Originally we used PECS to supplement speech, but now he uses an iPod with application Voice4u. He now has enough skills to understand and benefit from visual schedules, video modelling and very simple social stories written specifically for him. Visits to the doctor, dentist and hospital are no longer a nightmare, and he has been able to travel on public transport and even plane flights with a lot of support. Interaction with other children remains a challenge, but he can engage in co-operative tasks with them and take turns. 

 

R has been able to attend mainstream nursery and primary school and now special secondary school part time, accompanied by an ABA shadow from the home programme at all times, and receives education and tutoring for about 35 hours a week all told. We run year round, through the school holidays, but do go away for weeks as a family together now. Despite a tremendous amount of effort by him and dedicated teams over the years, R’s language comprehension and understanding of the world about him are still greatly impaired, and we still have significant behavioural problems – but now we do have the means to manage them effectively.

 

As time has passed, I and the team have taken on more and more responsibility for running the programme ourselves, but we still have professional input from ABA consultants 3 or 4 times a year, I have had several , each with different ideas to offer. The emphasis these days is very much on communication and functional life skills for adulthood - cooking, shopping, washing up, growing vegetables etc, in addition to developing the outdoor activities which he really enjoys.

 

My local authority fully fund the programme year round, but this was not easy to achieve. Initially we persuaded local councillors to fund the programme as a pilot project, which ran very successfully. But after a couple of years a decision was made to close the pilot. We then took the council to court and won an action to quash that decision. There were then many other attempts to stop funding, but we managed to dodge these one after the other, often at the 11th hour, until R’s (very decent) headmaster intervened and brokered a deal with the local authority.

 

Relations then improved with the local authority out of all recognition and a similar package for secondary education at special school was agreed by mutual consent. Given the severity of our child’s needs this was also a very much cheaper option for the local authority than sending him to a residential school (as they did other children with similar needs in the authority area). Relations with the local authority and the school are now excellent.R has an older brother, G , who has none of these difficulties. When he was young, I felt that it was a real juggling act to try to spend enough time with G. However, he seemed to enjoy and benefit from the company of bright young tutors who came in to teach his younger brother, and we tried to involve him in parts of the programme. G has recently left home to study medicine at university, and is perhaps a more mature young man, with a better understanding of the needs of others, than many other 18 year olds.

 

I hope that in the future this type of specialised ABA-based education will be widely available, especially for children like R who are completely unable to learn any other way. I feel that he has made the best progress he possibly could, and will be as independent as he possibly can be in adulthood, although I accept that he will need specialised help for the rest of his life.

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Another parent's ABA experience. What is striking in this story is how much families have to fight to get the best evidence-base

 

"Our son D was diagnosed as autistic before his third birthday. He was initially diagnosed by a private paediatrician we took him to. By that time I (a clinician with knowledge of autism) already knew he was autistic and had done a huge amount of research into what we could do next. We had therefore already decided on and started getting together, an ABA programme for him, by the time we got to see the NHS "paediatrician" in the local child development clinic. This was actually a junior doctor who was not yet a qualified paediatrician, despite being described on the clinic letter as a consultant, he did not have the necessary qualifications to be an NHS consultant. I know this very well, because I am an NHS consultant!.

 

After telling us our son had a diagnosis of autism, the NHS doctor could offer only one piece of advice when I asked what he would advise that we do next. He pointed to the phone number for the DLA benefits department, which was stuck up on on a post-it note on the wall above his head, and told us we could apply for some benefits. That was it. I then told him that we were starting an ABA programme. He had never heard of ABA. 

 

When D started ABA just after his third birthday he had no means of communication, was behaviourally impossible to control and banged his head literally hundreds of times a day, often hurting himself badly. Over the following year and a half of ABA, under a highly skilled BCBA and with the dedicated work of his tutors, the head-banging was brought under control and then eradicated, he learned to comply with instructions and to enjoy working with his tutors, and is now learning to read and spell. He does not talk but it seems likely that he will be able to communicate using a device he can write or type on. He is now in mainstream school part-time, with the ABA programme continuing in the afternoons. There are no behavioural problems at school and he loves it. 

 

We have, to date, paid for all of this, causing ourselves very severe financial hardship. The Local Authority issued a statement nearly a year ago, and included the ABA programme on it, but then simply refused to even acknowledge our requests that they start paying for anything. We took them to a Tribunal (expensive and unbelievably stressful) and won. That was six weeks ago, we are still to date paying for the programme ourselves and have not yet received a penny. The NHS has offered a few sessions of group speech therapy, and a bit of OT advice, which has had no effect at all. Nothing else whatsoever (although I have recently demanded to see a real consultant and requested that she refer him to to specialist unit for consideration of augmented and alternative speech devices, which she has done). 

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The stress, financial and emotional, on our family as been enormous, but I would do it all again at the drop of a hat. (The stress is not because of the programme itself, that has always felt like a saviour and a lifeline, it has been from having to pay for it all, and having to fight with the Local Authority to get them to even acknowledge that this is what he needs. And they have clearly indicated that at the end of this school year they expect him to be in school full-time and for the programme to have ceased. So the fight will no doubt go on....and on....). "

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Another parent's ABA story, which is both heart-rending and uplifting in turn.

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I am a mum of a lovely little boy aged 5 who is on the autism spectrum. My son, A, at age 2.5, was completely out of control: tantruming pretty much all of his waking hours, running away from children his age and had only few words which he did not use appropriately. We actually had to drive outside the area we lived in, to a completely deserted park, as he used to scream, cry and run the other way if there were one or two other kids in our local playground! At nursery, he was already in their “action” book but they had no clue what to do with him or why he was crying all day and eventually we had to pull him out. Up to that point, as a mum, I was in the verge of nervous breakdown and needed counselling myself! 

 

Just before he turned 3, we received the autism diagnosis from the NHS. The paediatrician had NO advice to give but she referred him to the SALT department as she thought he could benefit. But a 1 hour session a month didn’t really do much! So, googling the internet for answers, since doctors didn’t have much to offer, we came across ABA, the only evidence-based intervention for autism. With enthusiasm we contacted PEACH and attended one of their “parent” introductory workshops. Soon after, we started a full-time ABA programme for my son and had an amazing team of therapists coming to our home. Within, 3 months, A not only learned to talk and ask for the things he likes but he also learned that being with other people can be FUN and he really enjoyed the company of his tutors. Within 3 months, we were able to take A to the local playground where he waited for his turn with LOTS of other children (while many families take a visit to their local playground for granted, for us, at that point it was extraordinary!).

 

Unfortunately, the recession hit our household hard, my husband lost his job and couldn’t find another and with just my salary, we had no choice but to put an end to the very successful ABA programme we started. We simply could not afford it! At that point, I was already 5 months pregnant with my second baby. But armed with my ABA knowledge and having seen the benefits in 3 months, I refused to give up. I work in medical research, so I read books, articles and continued with my son’s ABA programme after work. While heavily pregnant, I had to work-full time to feed the family, come back home and do another 3-4 hours of ABA with my son. I managed to get him to answer yes/no questions, worked on his play skills and even got him toilet trained! “Just in time before the next baby” I thought to myself. Unfortunately, my body didn’t cope with the physical, emotional and financial stress, and at 8 months I lost my second baby boy (and almost lost my life due to a neglectful midwife but that’s another story). We also applied for a statutory assessment of my son’s special educational needs but that was refused.

 

We continued with my son’s ABA programme part-time against all odds. After the loss of my baby, I just made use of my entitlement to maternity leave and stayed at home to become a full-time mum/therapist. Slowly things went back to normal, my husband found another job and we got a tutor by the time I had to go back to work. All the efforts were worthwhile as A continued to make steady progress so we kept going.

 

Up to that point, my son was denied early and appropriate intervention and us, the parents, were left to bear all the weight of what an autism diagnosis brings with it. To make matters worse, when A reached school age, he was denied a “decent” and “safe” educational placement. We had to pull him out of the first school he attended at reception, because our LA sent a completely untrained support worker who wasn’t supporting him but was “babysitting” him at school. She was undoing all our hard work and within days he “forgot” his self-help skills which it took us months to teach him. It was a vicious circle where we had to get him into a school to proof that they are not doing enough and that he needs support using ABA to be more specific. But with no statement, he ended up in a “special measure” school where teaching is poor and where he is regularly bullied. We applied second time round for an assessment and because, this time round we could afford the private professional reports and an advocate we received a statement.

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This just goes to show that the statementing process in this country is simply NOT WORKING. If you are poor then you are not listened to and if you have the money to get “evidence” (surely an autism diagnosis is enough evidence?) then you get what you want. After fighting for 2 years to get my son statemented, I can finally sigh with relief, not for getting my son the help he needs. But simply for being able to change my son to a different school where he will be safe and not bullied!

 

On the plus side, all our efforts have paid off and ABA has truly transformed my son. From a child who was scared of his peers and thought to be in the moderate-to-severe end of the autism spectrum to a child who loves the company of others and who is now regarded as “high functioning”. Now almost 6, A has learned to speak in full sentences, to read and write and he can even tell you few things about his school day (which is a big achievement as at least we can pick up on the bullying when it happens!). He is still autistic, he still has language delays and still needs support BUT he is a lot better at managing his emotions (with tantrums only lasting few minutes at the most), he is a lot happier and he is able to attend to his teacher and access the curriculum with help. And most importantly, A now wants to be with his peers and wants to make friends.

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View from a Mum - why Speech and Language therapy (SALT) isn't working in the UK for autism

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As mum to an autistic boy who has had a slow and painful journey towards language, I wanted to share my story with other autism mums.

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When my son Robbie (pseudonym) was first diagnosed with autism at the age of two, we employed an NHS SALT who specialised in autism.

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She came to our home privately (£75 an hour) once a week for six months. She prioritised what she called the ‘pragmatics of language’. We played with noisy toys and bubbles with the aims of promoting eye contact, non-verbal initiation, and turn-taking. She introduced PECS, but although he quickly grasped the concept of handing over the right card for the right item, he never made one sound.

 

In retrospect I suspect she had missed out a key component of PECs: the reinforcement of speech. But it occurred to me early on that producing speech was very difficult for him.

 

The SALT gently suggested that he’d probably never talk. PECs, Makaton and visual timetables were her main recommendations. Ultimately, she and I parted company. I wasn’t ready to give up on Robbie being able to talk.

 

I felt that the SALT failed to take into account three key deficits affecting my son’s communication: first, as he’s autistic, he had no “social desire to please”, so it was going to take more than just “being a good boy for teacher” to motivate him to speak;  second, like some autistic children he has an additional diagnosis of verbal dyspraxia, meaning actually forming speech sounds is so difficult he avoids it if it at all possible ; and lastly, his autism meant he had very poor imitation skills.

 

After the SALT left, we enrolled Robbie for eighteen months in a TEACCH school, with regular SALT input. It was nice, but again no progress was made on speech or behaviours.  My observation was that TEACCH worked best for children already at the high functioning end of the spectrum.

 

Just after starting the TEACCH school, which was only part-time, another mother recommended ABA.  An ABA supervisor (£35 an hour) and tutor (£15 an hour) started working with Robbie in the afternoons, at home.  Here’s what they did:

 

First, they “paired” with my boy. They established themselves as fun people to be with, ready to take him to the swings or park – his absolute favourite places.  They called activities which motivated him “reinforcers”.

 

Then they started work on his non-existent imitation skills. They would say “Do this, Robbie” and clap their hands. Then immediately they would hand-over-hand prompt his little hands to clap. For this he would get massive reinforcement (in his case, a crisp or sweet worked best). The sweets though were paired up with lots of praise and cries of “good boy”, so that we could quickly fade out the food and rely solely on social praise.

 

Eventually, they were able to stop the hand­­-over-hand prompts when he began to understand and respond to verbal instruction alone. They moved onto gross and fine motor imitations – raising arms, hopping , pinching  finger and thumb together etc.

 

After just 3 weeks of ABA therapy,  he knew that “do this” meant “do what I am doing”.  What Robbie loved above all was being pushed on the swing.  So one sunny August day they said “Do this Robbie – puh” – making a “puh” sound. He tried to imitate it, poorly at first of course, but even a vague attempt at a P sound got him a reward – a huge push on the swing and loads of excited smiles and praise.

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This technique was used for other sounds like “c” for crisps, “s”  for sweets, then gradually extended to whole words and phrases, like ‘push me’. He was taught to say “open” to get into his toy cupboard. Then “open” for doors, packets of crisps, presents etc. This ensured the skills he was learning generalised across different settings and people.

 

ABA therapists refer to such language as ‘mands’. As SALTs, you call it ‘requesting’. For me they were simply Robbie’s first words.

 

So that dealt with issues of motivation and imitation. The verbal dyspraxia was addressed by months of painstaking work getting Robbie to model and shape sounds in front of a mirror or the tutor’s own face. His efforts were met with different reinforcers as he moved from sounds to words and phrases. Work on these vocal imitation skills (known as “echoics”) made a massive difference to his clarity.

 

Now he’s 10, he has literally thousands of words and an increasing repertoire of phrases. He can make his needs known and even participate in simple conversations.

 

He is now very clear in his preferences – particularly where he wants to go and what he wants to eat (“I want to go home” “fishfingers and ketchup”)!

 

ABA has effectively taught Robbie how to learn - not just language, but also reading,  writing , numbers, computer work – all have been taught using ABA techniques.

 

I regularly share my story with other mums, who have had equally good results from ABA  – some with quite stunning outcomes. Yet to my dismay, I have met nothing but disapproval and discouragement from health and education professionals.

 

They say, in dark tones, that ABA will “destroy family life”; that it is “very intensive” (subtext: what a cruel mum I must be to put my son through all this). I have been told that ABA will never be funded, despite its good results. I am treated almost like a cult member – as if the ABA tutors have brainwashed me and Robbie’s progress is just in my imagination despite the fact that we have the data to prove that these changes have taken place.

 

The stark contrast between what I had been told and what I had seen with my own son was difficult to reconcile, so I did some research.  I found that there is a vast body of research – spanning four decades – which documents the effectiveness of ABA for autistic children.

 

A number of systematic reviews of evidence-based practices in autism conclude that input of the sort my son received has the strongest evidence base of any comprehensive intervention (Eldevik et al, 2010; Rogers, 2008).

 

Indeed the RCSLT  (Royal College of Speech and Language Therapists)  itself endorses ABA for children with autism (see Resource Manual for Commissioning and Planning Services for Speech Language and Communication Needs).

 

Searching the website NHS Evidence brought up over 500 references to the efficacy of ABA-based interventions.

 

So why, despite the current emphasis on ‘evidence-based practice’ within the NHS, are so many SALTs dismissing ABA out of hand?

 

And why are we not looking to the US and Canada, where ABA is more mainstream for autistic children, so that companies like Microsoft even fund it in their employee health benefits?

 

I genuinely don’t understand why we are so virulently anti ABA in this country, when I have seen such life-changing results for Robbie and others.

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References

 

Eldevik, S., Hastings, R.P., Hughes, J. C., Jahr, E., Eikeseth, S., & Cross, S. (2009). Early behavioural Intervention for children with Intellectual Disability. Journal of Child and Adolescent Psychology 38 (3) 439-450.

 

NHS Evidence http://www.evidence.nhs.uk/default.aspx

 

Rogers, S.J., & Vismara, L.A. (2008). Evidence-based comprehensive treatments for early autism. Journal of Clinical Child and Adolescent Psychology, 37, 8-38.

 

Royal College of Speech and Language Therapists. Resource Manual for Commissioning and Planning Services for SLCN  http://www.rcslt.org/

 

 

 

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