How do we cure autism?
First of all: there is no fix. There is currently no cure for autism. It is a lifelong condition.
Autism is a communication and processing disorder, so the communication problems can often be overcome. There are different coping strategies to try and deal with the processing issues.
So, you can do something.
ASD is a spectrum disorder so as with all conditions, every child needs his or her own therapy prescription. Many of the most popular therapy programmes are psychosocial in nature; that is, they help treat the way the brain processes the world around us and the social environment. You will notice that many of the key components of different therapy programmes are similar: ABA, PECS, TEACCH and SPELL seem to overlap in terms of their use of visual stimuli, communication games and methods for reducing anxiety. Often the main differences are in focus and, frankly, branding.
There are also biomedical treatments such as special diets and drug treatments which providers claim can help to treat autistic symptoms, but there is huge controversy over these types of treatments and whether they do more harm than good. The general advice on these treatments from the National Autistic Society (UK) is: avoid.
Below is a brief synopsis of the most popular therapy options.
(1) ABA (Applied Behaviour Analysis)
ABA (Applied Behaviour Analysis) is one of the most widely accepted therapies for children with autism spectrum disorder. ABA helps teach social, motor, and verbal behaviours, as well as reasoning skills, and works to manage challenging behavior. It’s based on teaching these skills through observation and positive reinforcement.
See video example below:
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ABA training is most effective if therapy begins when children are younger than age 5, although older children with ASD can also benefit. To get the most benefit from applied behavior analysis, your child will need extensive one-to-one therapy for 20 to 40 hours each week. A major drawback is that this type of intensive therapy is expensive (for details on the financial issues of therapy programmes, click here). Also, there is a considerable amount of controversy about ABA, most of which seems to centre around quality control. It seems that many people have advertised themselves as ABA therapists with either no or very little training and qualifications. Unsurprisingly this has led to a lot of negative experiences for vulnerable children and their families. The reputation of ABA as a therapy option has been badly damaged by this.
One solution to the daunting financial implications of an intensive ABA therapy programme is to become your child’s therapist.There are courses and programmes available which offer parents the chance to learn how to deliver ABA and similar therapy programmes.
More information is available from the following organisations; please note that I am not endorsing any of these providers. They are listed here to help you start your research into what sort of services are available in your area. Please carry out due diligence, contact families they have worked with for references, look up forums, etc:
- Autism Support UK (this contains links to many ABA providers across the UK, including some of those listed below)
- Child Autism UK (formerly PEACH)
- Acorn ABA
- ABAble (Online training)
- ABA Easy Steps
- Autism West Midlands
- Focus Autism UK
In Northern Ireland:
Parent as Therapist: Think practically
A couple of serious caveats to this:
1. Are you up to the job? Mentally? Emotionally?
Firstly, do you have the mental / emotional capacity, right now, to train to be an autism therapist? I am not saying that you are not an intelligent or capable human being. I have no doubt that you are. BUT when we got the news that our son was autistic we were wrecked. We had been so confused and worried for so long, we were now starting on a new, unplanned journey to rescue our child from a life of solitude and loneliness and we were also raising 2 other kids (aged 5 and 8) with all the sleep disruption and attention which that entails. We started to look at it, as Gill was not working at the time, but it required a level of detachment and objectivity that does not come naturally to mothers.
2. Dual roles: parent and therapist
Secondly, what if / when your child rejects you in your role as a therapist? We know of several families who implemented their own PECS therapy programmes for several months, but eventually the dual role of mummy-as-a-mummy AND mummy-as-a-therapist became too confusing for the kid and he refused to co-operate any more.
It may be that financial pressures dictate that this is the only way to do it and I support you in taking this path rather than doing nothing, if nothing is the only alternative to DIY. But go into it with realistic expectations of yourself and with support from family: it is a tough job.
(2) PECS (Picture Exchange Communication System)
The Picture Exchange Communication System (PECS) is a communication system in which a child is taught to communicate with an adult by giving them a card with a picture on it.
PECS is based on the idea that children who are non-verbal can be taught to communicate using pictures.
The adult starts by teaching the child to exchange a picture of an item he wants. For example, if the child wants to play with a certain toy, he will give a picture of the toy to the adult who will then name the toy (eg car) and ask is he would like to play with the car, encouraging him to say “car” or even just the syllable “cah”. The adult then gives the child the toy.
The adult will then teach the child progressively more difficult skills, such as using pictures to make whole sentences or to express preferences.
The Picture Exchange Communication System is an important part of many different therapy programmes and approaches, such as ABA.
See video example below:
(3) TEACCH (Treatment of Autistic and Communication Handicapped Children)
TEACCH is an acronym for Treatment and Education of Autistic and Communication-Handicapped Children, a therapy programme developed by Division TEACCH, part of the Department of Psychiatry of the School of Medicine at the University of North Carolina in the USA.
The TEACCH Autism Program has several key components including
- an understanding of autism; the patterns of thinking and the corresponding behaviour of autistic people.
- the development of an tailored therapy plan according to the individual needs of the child (and the family).
- the use of structured teaching (which consists of four elements: physical structure; visual schedules; work systems; and task organisation).
- a broad range of cognitive, developmental, educational and behavioural strategies.
- co-operation between therapists and parents.
Aspects of the TEACCH programme are often used as part of an individualised therapy programme for an autistic child. It also forms a key element of the SPELL approach, used in services run by The National Autistic Society in the UK (see next point).
See video here:
SPELL is the National Autistic Society’s therapy programme for autistic people. It emphasises the need to be flexible in our approach to dealing with and helping people on the autistic spectrum. There are 5 key principles:
- Structure: creating certainty and predictability for the autistic person to reduce anxiety. Practical solutions can include visual charts and daily planners.
- Positive approaches and expectations: there is much negativity associated with autism, yet autistic people like all human beings have strengths as well as weaknesses. By finding out what the individual’s interests and abilities lie, these can be used to help build confidence and self-esteem.
- Empathy: trying to see the world as the autistic person sees it is very important; much of the sensory information (sights, sounds, tastes, textures and smells) which a neurotypical person perceives as unremarkable may be interpreted by the autistic child as frightening, unpleasant or even painful. Being able to relate to the autistic person should help to build a relationship of trust, helping to reduce anxiety and also improve communication.
- Low arousal: the emphasis in the therapy process is on keeping everything calm. A distraction-free, uncluttered environment (as much as possible; it does not have to be ultra-minimalist), a temperate therapist (parent or professional) who has the patience to give the autistic person time to process and respond to information and questions.
- Links: it is easy for autistic children and their families to become isolated from the community around them. The autistic person, family, therapists, school teachers, employers and anyone else in the wider support network must communicate with each other and work with the individual in a consistent manner to make sure that the most effective approaches are being replicated and anything which is ineffective or causing problems is discontinued.
Here is an overview of the 5 principles of SPELL from the NAS:
(5) Relationship Development Intervention (RDI)
RDI is a relatively new proprietary therapy developed by clinical psychologists Steven Gutstein and Rachelle Sheely in the 1980s.
So what is RDI? Well, I have only started to investigate it myself, but I will pass on what I have established so far. I would encourage you to do your own research obviously and please feedback if you have been involved as a parent in an RDI programme, especially in the UK: there seems to be very limited information about the therapy in Britain or Ireland.
RDI: the rationale
Whilst PECS and ABA are simple therapy processes which seek to mask social and linguistic deficits by teaching autistic people a series of learned responses to certain situations, RDI is a bit more radical. RDI requires parents to rebuild relationships with their autistic child and in so doing, teach the child how to process everyday social situations differently and therefore react differently in their physical actions. It seeks to change the mental processing of an autistic child so that they can start to unlearn their brain’s responses to different social, linguistic and sensory stimuli. The hope is that these child can be encouraged to think in a way which is more flexible. The rationale is that by changing the thought process, the autistic person develops much more neurotypical responses. Hence many of the social and linguistic problems experienced by autistic people are overcome.
Watch video explaining the process here:
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Example video here:
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Positives of RDI?
The ambition of the therapy is impressive, as it is designed to essentially take the time to help a child rewire their own neural pathways so they respond to life’s events in a way which is more ‘neurotypical’, not because this is what is expected of them or helps their parents avoid embarrassment, but because it allows them to participate more confidently in their own lives and build better relationships with others. The idea of flexible thinking or ‘dynamic intelligence’ seems to be the key cognitive principle behind the therapy and the treatment seems to be built around using everyday events and routines to develop a flexible thinking approach rather than the automatic, established responses which have been used to date.
Downsides of RDI?
Hard to tell. Possibly;
The cost seems to be more reasonable than ABA on a monthly basis, mainly because the aim of the programme is to train the parents as therapists and therefore the number of hours per month of professional help is much reduced. Ballpark figures suggest $5000 per year (about £3900 at time of writing), which is a lot less than ABA, although travel and materials costs are not included.
2. Evidence of effectiveness
Aye there’s the rub. Since RDI training is relatively new, there isn’t much clinical evidence to show its effectiveness. A single study carried out by the practitioners indicates positive results. Surprise surprise I hear you say and it is easy to understand the cynicism. The Research Autism group in the UK (now defunct as a charity, but incorporated into the very reputable NAS…link….) has quite a bit of review detail on RDI but indicates strongly that more independent studies are required.
How much is enough? Anecdotal reports of a minimum of 3 hours per week of ‘lab time’ are somewhat vague. Also, the entire programme seems to take years. There are apparently 1138 objectives (48 of which are parent objectives), housed in 12 ‘stages’, to complete to cover the whole RDI process. That does not include workshops, seminars and time spent in feedback to your consultant.
My own personal reaction is to ponder the practicalities of a programme with so many steps and stages; can families be organised enough and self-disciplined enough to keep this up long enough to see the benefits? There is logic to the approach and I am impressed by the ambition of the methodology; it is the closest thing to a ‘cure’ for autism I have seen. But I would like to see more scientific studies carried out and I think the lack of robust research will hold back the widespread adoption of the therapy.
Gutstein and Sheely founded the Connections Center in Houston Texas in 2001 in order to deliver and market the intervention. They operate the company RDI Connect to deliver the programme. For those who want to find out more about RDI as a therapy option, perhaps a first step might be to look up their website https://www.rdiconnect.com/ organisation. Gutstein has also written books on autism treatment such as ‘Relationship Development Intervention with Young Children: Social and Emotional Development Activities for Asperger Syndrome, Autism, PDD and NLD’, and ‘My Baby Can Dance’.
(5) Sensory Integration and Related Therapies
Many children with ASD have sensory problems. Some are overly (hyper) sensitive to stimuli such as lights, noises, touch and even tastes. Others are not sensitive enough (hypo sensitive).
Hyper (over) sensitive
This could be an irrational fear of heights, a dislike of certain textures and surfaces (eg the labels on a school shirt, the texture of yoghurt, messy eaters, the feeling of getting hair cut), dislike of loud or sudden sounds (balloons are a very common example; if you want to spot the autistic kids at a party, send someone in with a balloon. The ASD kids will put their hands over their ears and adopt a facial expression as if a hand grenade is about to go off), a phobic dislike for certain objects (this could be any random object; a certain swing at the playground, a certain type of flower, wind chimes; it is hard to predict).
Hypo (under) sensitive
A child who is hypo-sensitive appears to have no fear or doesn’t feel pain. He may move constantly (eg fidgeting, rocking, running around, leaning on other people) or touch lots of things in near proximity. He may seem to be unaware of people and circumstances around him (again, that ‘in a world of his own’ feeling).
Praxis is a motor planning process. It is how your brain figures out what you want to do (physically) and how to make your body do it. A child with praxis issues (dyspraxia) may appear to be clumsy, may drop items often (a cup, cutlery, toys), avoid fine motor tasks such as drawing or jigsaws, has difficulty riding a bike and taking part in PE or sports.
Dyspraxia can be treated by a GP referral to an occupational therapist.
There are a number of sensory therapies that have been successful at treating children with autism spectrum disorder. Although these therapies can help, there is no scientific documentation that sensory therapies are effective in treating the disorder.
See an example here:
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(5) Medical interventions and drug treatments
In 2013, NICE published a guideline on the management and support of children and young people on the autism spectrum. As well as outlining therapy options such as ABA, they also rule out a number of biomedical interventions for ‘management of the core symptoms of autism’, including:
- exclusive or restrictive diets including gluten-free, casein-free or ketogenic diets*
- hormone therapies or testosterone regulation
- hyperbaric oxygen
- vitamins, minerals and dietary supplements
- drugs which are usually given for problems with memory and thinking
- anticonvulsants, antidepressants or antipsychotics (unless other conditions are present, eg epilepsy and depression)
Autism is a lifelong condition. There is no fix, there is no cure. Sorry.
But, there are several therapy options which can help. Many of the communication, sensory processing and anxiety problems which it creates can be mitigated by therapy programmes such as ABA, PECS and multiple other acronyms.
As with any treatment programme, there are issues in terms of quality of provision, suitability of treatment, cost, funding and even side effects; not physical but problems like disruption to family life and financial strain. And as ever, the snake oil merchants should be detected and avoided.
Do your research. Look at the options. Carry out due diligence on the therapies and on the available local providers. Look long and hard at the realistic costs and what, if any, funding is available.
You can’t cure it but you can do something. Just do that.
*Full disclosure: although dietary changes such as gluten free and casein free options are listed here by NICE as best avoided, my son was one of many autistic children who had digestive problems on a regular diet. Specifically, terrible constipation which meant after 3 days of not pooping, he cried all the time and did not sleep. Which meant: so did I. And his mum (the crying and not sleeping; not the pooing). At the advice of a friend who had an autistic child, we tried a gluten free diet for a 1 week trial. After 3 days, the problem was solved. We were supposed to try the casein free diet afterwards but we never got to it because the GF approach worked so well we didn’t bother.