There isn't one single intervention that has been proven to benefit every person with autism or Asperger syndrome, and it's hard to sort through the many different options. You may also feel frustrated, after trying an intervention and not seeing any improvement.
It's good for parents to explore all of the possibilities, and find the treatment that's right for your child. Unfortunately, you may also be vulnerable to unscrupulous people who profit from making false promises.
Every day and every dollar that you spend on a treatment that doesn't work is time and money that you could be spending on effective treatments that will help your child. It's important to know what kind of evidence you should be looking for when you choose the right treatment.
Let's say that I have a cold. I eat three pickles, and by the next day, my cold is gone. Usually, when I get a cold, it lasts for a week, but this time, I was only sick for a day. It's possible that I might start to believe that eating pickles cured my cold.
Obviously, we know that the pickles didn't cure my cold. There must be another explanation for why my cold got better. Maybe I got better because of something else that I did -- or maybe it wasn't such a bad cold in the first place, and my immune system fought off the germs.
But once you start thinking it's the pickles, it's easy to collect more "evidence". The next time I have the sniffles, I eat pickles again -- and I don't get a cold at all. The pickles not only cure colds, but they prevent them, too! I tell a friend about it, and she tries eating pickles when she gets a cold. She gets better, too. It really works!
This is called "anecdotal evidence", because it's one person's story -- an anecdote about what happened to me, and my friend. Anecdotal evidence can be very powerful, because we're interested in other people's stories. And those stories can be very convincing, because the people who tell them really believe that what they're saying is true.
If I believed that pickles could cure colds, then I would tell everyone I knew. If I saw somebody sniffling, I would feel like it was my duty to let them know about the amazing power of pickles. How could I stand back and watch them suffer, when the solution is so simple?
I wouldn't be lying deliberately -- but, unfortunately, I wouldn't be helping them, either. It's possible for a good-hearted, honest person to sincerely believe in something that happens to be mistaken. That's why you can't trust anecdotal evidence. It sounds true, and you might even like the person who's telling you about it, but it's just a story.
Warning sign #1: If you read about a new treatment, pay attention to how many anecdotes they use. If the only evidence they have is anecdotal, then that's a red flag. It probably means they don't have any scientific evidence to back up their claims.
Too many benefits
Once I start believing that pickles can cure colds, then I might start trying it for other things, too. When I get a headache, I eat a pickle -- and that makes the headache go away! The doctor said it would take me six weeks to recover from my surgery, but I ate pickles, and I felt better in four weeks! After a while, it seems like pickles can do anything.
It's hard to tell whether the pickles helped my asthma or not, because I can't compare it to anything. I know that I feel better after eating pickles (and using my inhaler). Would I feel just as good if I hadn't eaten the pickles? I don't know for sure. But if I already believe that pickles cured all my other problems, then it's easy to believe that they helped with my asthma too. I also have more energy now that I'm eating pickles, I'm losing weight, and it seems like I'm a better dancer!
Warning sign #2: If a new treatment promises a lot of benefits -- especially if the benefits don't seem to be related to each other -- then it probably doesn't do anything at all. In the old-time medicine shows, you could buy snake oil elixirs that would cure coughs, colds, joint pain, hair loss, rashes, sore feet and bad breath. These days, we don't have medicine shows anymore; we have the internet. Be cautious about any treatment that promises something for everybody.
By now, I've figured out how the pickles work. If you build up a lot of toxins in your body, then your cellular structure gets out of balance. The pickling process helps to stabilize oxidized nutrients in the pickles. When you eat pickles, the oxidized nutrients are released, which supports your immune system and helps to regulate the energy flow in your body.
Warning sign #3: Watch out for these words: Toxins, energy, balance, stabilize, support, immune system. People use those words to describe treatments that don't work, because they sound good, but you can't really pin down what they mean. You can't measure your "energy", and whether it's in balance or not. "Supporting the immune system" doesn't really mean anything at all; people use the word "support" because they're not allowed to use the word "cure".
Practical tips on selecting an intervention
Early interventions for Autistic Spectrum Disorders are continually developing, and can present a bewildering array of approaches, costs, benefits and waiting lists to parents who may still be reeling from the impact of their child being diagnosed. Although parents may feel a sense of urgency to find therapies quickly, in the long term it is advisable to put time, research and discussion into your choice. The therapy should be designed for children with Autistic Spectrum Disorders. If it focuses specifically on your child's particular condition (ie. Autism or Asperger's) so much the better. The therapists should also take time to observe and assess your child, then discuss the theory behind the therapy, how it is works, and its suitability in your child's case.
An experienced therapist will acknowledge and respect your role as a parent. You know your child best and your involvement should be emphasized. The therapy should also provide parents with strategies to implement in the home environment. Ideally a therapy should give you practical approaches to use in general life situations.
Common elements of effective interventions
There is a broad range of interventions styles available, so a number of studies have looked for the common elements in these interventions regardless of the particular style chosen (Dawson and Osterling 1997). The effectiveness of interventions does not seem to rely so much on the particular styles chosen, but how well they are adapted to suit the needs and strengths of the child and family as a whole.
The most effective interventions address the following issues: • Attention and concentration • Appropriate social interaction • Ability to imitate other people • Language skills • Appropriate play.
As Autistic Spectrum Disorders affect a child in many ways, effective interventions usually have a stress on a multidisciplinary approach, with the possible involvement of occupational therapists, speech therapists, teachers, psychologists, physiotherapists, and of course, the parents. In the same spirit, a variety of interventions may be used together to better address the needs of the individual child.
Parents should be actively involved
The most effective interventions involve the parents heavily in learning to consistently apply the intervention in their child' life. Experienced therapists should be aware of the difficulties faced by parents and be able to support them as issues arise.
Intensive supportive and structured teaching environment
The teaching environment focuses on the need for routine and enabling the child to predict what will happen next. The environment is also highly supportive and aims to generalize strategies learnt from one context to another. The number of hours devoted each week to interventions are important too. This can vary from a suggested minimum of 15 hours per week (Dawson and Osterling 1997) to the 40 hours per week or more of intensive Applied Behavior Analysis.
Proactive approach to challenging behaviors
There is a proactive approach to challenging behaviors by identifying and minimizing the triggers for behavior, and looking for what the child is trying to communicate through the behavior. There is also an emphasis on a structured environment, holding the child's interest and using positive reinforcement to encourage appropriate behavior.
The most effective interventions are increasingly stressing the need to encourage choice, independence and a focus on the child's control of what happens during intervention.
Support for transition to school
The start of schooling is a difficult time for children on the autistic spectrum and the most effective interventions encourage independence in a child that makes this transition easier. Extra support is provided during this transition and the intervention therapists should work with parents to find the most suitable school available for their child.
Visual cues for communication
A common characteristic of children on the autistic spectrum is a difficulty with verbal language. Augmentative communication uses strategies such as the Picture Exchange Communication System, interactive story boards and social stories to develop communication skills.
Encourage interaction with other children
Effective interventions stress the need for a child on the autistic spectrum to engage in social interaction and play with other children to develop appropriate communication and play skills.
Self-stimulating behaviors, rituals and obsessions
An emphasis is needed on why these behaviors occur. Interventions should seek to minimize these behaviors when inappropriate, but at the same time realize that as pleasurable activities they can be used as positive reinforcement and managing stressful situations.
Some people claim miraculous benefits or cures for children on the autistic spectrum. Remember that each child has a diverse range of issues from being on the autistic spectrum and will respond to various interventions in various ways. There are also less reputable services providing 'cures' on the Internet that seek to exploit every parents desire to see their child develop as normally as possible.
Some children improve substantially even without therapy, so it is very difficult to know when therapy has definitely made the difference. In other cases, a therapy may work so well for one child it will appear as if it has 'cured' the Autism, but may only have moderate to little effect for most other children.
An evidence-based approach uses objective rigorous testing to look at large groups of children under a therapy, and have a 'control group' of children not under the therapy. Unfortunately this approach has not been applied to many new therapies so far. The next best option is to look for general agreement on an intervention's effectiveness from Autism associations, researchers, journals and respected books on the autistic spectrum. When a therapy is quite new, you may need to rely on anecdotal evidence from wide range of parents who have used the therapy. Try not to be swayed by one or two parents who had huge success. You are looking for a substantial number of parents who consistently report benefits. Talk to parents in support groups, get into autism forums and talk with Autism associations about your findings.
In your research, ask when the intervention style was developed, how widely it is used and its evaluation from autism specialists. Unfortunately, therapies are often very expensive. Some parents look at creating their own home-based budget intervention program. Your local Autism association should be able to inform you on subsidies, government treatments and other options available.
Where to start?
Given the controversies, debates, lack of research and variations on the autistic spectrum, making general suggestions on choosing interventions is difficult. However, there is a fairly broad consensus that the first step is assessment by an experienced pediatrician or team to see in which areas your child needs support.
In most cases, the next step is implementing a behavioral program such as Applied Behavior Analysis which is the most rigorously tested intervention method to date. When there are sensory problems, some form of sensory integration therapy will prove useful. Communication issues can be dealt with using a variety of interventions, some of which include Applied Behavior Analysis and Social Stories.
Finally, many parents look at biomedical interventions such as restrictive diets and vitamins, although evidence for these is still mostly anecdotal in nature with little evidence-based research done to date. There is no one approach here that helps all children across the autistic spectrum - however some parents find that a particular biomedical intervention can have a positive effect. When this occurs, there is usually debate over whether the biomedical intervention is actually treating the Autistic Spectrum Disorder, or simply one of the many comorbid disorders.