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The offering on the “treatment-market” becomes overwhelming. This is made even more visible trough the extraordinary development of modern means of communication such as Internet e-mail discussions, where parents and professionals exchange information, or private web sites, which publicise new therapies or approaches of autism, often without any scientific peer reviews.

In view of such a situation, what treatment do parents have to choose for their child with autism? What if spectacular improvements or even complete recovery are promised?  Are all these treatments worth trying? Do you have to believe everything what is promised?

It is impossible to describe and evaluate all therapies. Each year new therapies are invented whilst existing therapies disappear.

What can be done however is to offer a set of criterions which can be used by parents when evaluating therapies. These criterions are an important tool for empowerment of parents, since they enable parents to make up their mind about therapies without being dependent of other people’s opinions.

A matter of common sense

Often the designer of a new therapy promises the most incredible results, sometimes even the healing or complete recovery of the child. Very often a book is published describing some success-stories: children with autism grow out of their autism, go to university, become artists, . . . It is normal for parents to be touched by this kind of stories.  Even if you know that autism cannot be cured, your hope for an happy end never stops completely. Success stories are appealing for these feelings of hope. Since the welfare of our children is involved, not only our feelings but also our common sense and some critical reasoning are important.

Our common sense should tell us that you only start with a therapy of treatment if reliable and objective results can be shown. This means: the results of the therapy  have been properly evaluated.

So, what is a reliable and objective evaluation?

F.Happé describes in her book “Autism: an introduction to psychological theory” (1994, London, UCL Press) a number of criterions for the evaluation of therapies, interventions and treatments.

A reliable evaluation or measurement of the effects

• has to be done by an independent organisation and certainly not by whom who invented or promotes  the therapy or method;
• should include the measurement of effects by reliable and valid instruments such as ADI-R, CARS, VABS etc. and must not refer to impressions which are always subjective;
• implies the assessment of the child before and after the treatment. This is the only reliable way through which differences can objectively be determined. It is also recommended that the evaluation is repeated some time after the treatment has been stopped to check whether the improvements are permanently acquired. In a lot of therapies the effects vanish from the moment the therapy is stopped or  becomes  less intensive;
• should include a control group not receiving the therapy. It is very well possible that certain improvements are the result of a normal development and therefore not the result of the therapy. Effects may also be the result of elements which are not specific for the therapy. Working very intensively with a child may invoke improvements which are not directly related to the therapy itself but that are more probably the result of the amount of individual attention the child received (no matter what kind of therapy is offered). Therefore a comparison with a control group that did not receive the treatment is absolutely necessary. The composition of the test group and the control group must be similar since children with autism show a lot of differences: the degree of autism, the  calendar age, the developmental age, . . When these variables are not controlled for the difference in results between the two groups could well be influenced by differences in these variables rather than they are the effect of the therapy or treatment;
• includes a big enough sample of subjects. The evaluation must be based on a representative group of children, not just on one or a few people. A limited number of success stories is no prove at all. Again, since autism involves a wide spectrum of disorders, it is possible that a given therapy only has a positive effect for some children, but at the same time does not have any impact at all on other children.

Side effects and miracles

The choice for a given therapy or treatment not only depends on the effects themselves but also on the side effects for the child itself and the family. In the case of medication, these side effects are obvious but other methods can also have serious consequences. Certain treatments can be so intensive that the parents and/or the child become over-fatigued, children may become aggressive since the pressure on the child becomes too high. In some therapies parents may even be accused, e.g. Facilitated Communication even lead to the prosecution of the parents before court being charged of sexual abuse of their child. Sometimes parents are refused the participation in or access to the treatment. Other therapies are extremely expensive. Other therapies imply a complete isolation of the child from its parents.

Until now there is no therapy resulting in a real healing or recovery of all people with autism. As long as we lack an exclusive biological marker that is universal in all people with autism, it doesn’t even make any sense to mention healing. Although people with autism can learn a lot and acquire many skills, autism is a lifelong disability and miracles do not exist.

Feel free to ask

Despite the already mentioned drawbacks, certain therapies and treatments do contain valuable elements and do have positive effects to a certain extent. It is therefore wrong to condemn all treatments and therapies.

To avoid disappointments or other unwanted side effects, parents should look however for an answer to the following questions.

1. What effects are promised?
2. What evidence exists for these promises? Has there been an evaluation according to all the rules as mentioned above?
3. What is the intensity of the treatment? How many times a week, how many hours a day? How long will it take in total?
4. To what extent parents are involved? Are parents allowed to assist during the treatment? Are there certain things expected to be done by the parents? What is exactly the participation of the parents? How can parents check independently whether the child is benefiting from the therapy or not?
5. Who is assessing the results of the treatment? Is this done by the therapist himself or by an independent party? How are the results measured? Does the evaluation also involve the satisfaction of the parents and what is the weight of this satisfaction in the evaluation?
6. To which extent the therapy will improve the independency of the child? Will the child remain dependent on the therapy? What elements in the therapy or treatment enhance the generalization of the expected effects to real life situations? Will the parents become more self-supporting as a result of the therapy? What is the empowering effect of the treatment?
7. What is the vision on autism of the therapy? What is the theory of the therapy concerning the origins and core deficits of autism? How is this theory translated into the therapy? Does the theory only involve one aspect of autism (e.g. the social problems) or does it take the whole person into account?
8. How and to what extent are possible side effects being followed up? Are there guarantees that the advantages for the child are more important than the disadvantages?
9. What about individualisation? Is the same therapy applied as such on all children or are the individual characteristics of the child taken into account? Is there any assessment before the therapy so that the program can be individualized and geared towards the individual needs and characteristics of the person and his family?
10. What about collaboration with other professionals working with the child?
11. What is the price of the treatment?

This checklist, although not exhaustive, is not only useful for evaluating therapies but can also be used  to evaluate and compare  different educational systems.

Last  but not least

Until now scientific research of different therapies and treatment of autism is very poor although this is in the interest of all people with autism. Detergents, cars, beers, ... almost any product is being examined in detail by consumer-organisations. What are we waiting for? There is an urgent need for additional research on therapies and treatments of autism. Nice promises, intriguing success stories and attractive adds or leaflets are not enough basis to build a future for people with autism.

Peter Vermeulen (1994). Niet alles geloven wat ze beloven. (Do not believe every promise). Autisme (magazine of Autisme Centraal), 13 (5), 22-28.

For more information on « Autisme Centraal »: www.autisme.be