Helping autism families

TONI BLACKETT-FELIX

AS I READ the article by Dr Radica Mahase headed Struggles for Therapy in Monday's Newsday, I was filled with a mix of emotions but the overwhelming one was concern. I am concerned that the need for improved parent education is being overlooked.

Let me start by saying that all the experiences presented by Dr Mahase mirror my experiences with parents and families as well. As an education therapist with a background in family intervention I have heard similar stories all too often.

However, I believe that the missing step before starting therapy for any child with special needs, educational or otherwise, is parent education.

Who helps the family choose what is a priority if resources are limited? Helping them answer questions like:

* What is therapy and what to expect from the process?

* What is your role in all of this as a caregiver?

* What are all the considerations for parenting a child with special needs? It is not the child alone that needs support or therapy but the parents and siblings as well.

While I cannot speak with authority on why other therapists would refuse to see a potential client, I can speak to mine's. Scope of practice – that means that I would only take on a client if I feel certain that I am able to help them and the help that they need falls within my remit as a professional educational therapist. To do otherwise would be unethical and this decision should not be knocked, but encouraged so that the highest levels of integrity are maintained in one's practice.

Equally important is that I would also need to consider my physical safety, the safety of other people in the office and that of the client's as well. If any or all are at risk it would be a breach of the ethical guidelines under which I am bound to practise by virtue of my professional membership in the AET (Association of Educational Therapists).

While this may be hard for a family to accept, it is not a rejection of them or their child but rather having unconditional positive regard for them and their needs. Especially if the therapist in question, as Dr Mahase reports, lets them know that there is a step they need to take before the therapist can help them. Sometimes that is behavioural intervention, sometimes that is medication, sometimes it is both.

On the flip side, maybe more therapists need to do de-escalation training (like Team Teach) for dealing with clients who have the potential to be physically aggressive? But that is a conversation for another time.

Dr Mahase goes on to talk about the lack of standardisation of costs and therapists charging "whatever they want." That tone is incendiary and makes it seem that parents are being unequivocally taken advantage of by all therapists. Maybe that is true for some, but surely not for all.

So yet again I ask: Who is educating parents on what is the average cost for a particular type of therapy? How do parents verify that their therapist is who they say they are and have the skills they claim?

Cost is based on all the above and our overheads and so much more. Standardisation would be difficult if not impossible to achieve as therapists can grow and add to their skill set and repertoire (resources both physical and internal), thus increasing their value, which would then be commensurate with fees...one would hope.

Making therapies available in the healthcare system is a brilliant start but to suggest that only two be added initially is to ignore the vast needs of families and caregivers that should be tackled simultaneously and prioritise the needs of families with children who have autism diagnoses of moderate or severe (level 2 and below). This can be seen as ignoring the different but no less important needs of families with autism level 1 diagnoses (mild).

Interventions like social skills training, educational therapy, executive skills coaching, psychological counselling and many more should not be put on the back burner ever as it not enough to cater to some but not to others.

I wholeheartedly agree with Dr Mahase's concluding sentiment that the families that have people with autism need to better catered to, but I will expand it to say all special needs people need to be made a priority. However, that cannot be achieved by the slighting of therapists or the miseducation/undereducation of parents.

Parents need more information readily available to them to make decisions on the basis of facts and knowledge, not desperation and emotion. And maybe there needs to be a national forum/platform where therapists and medical professionals understand the work that the others do so that parents are properly referred.

Toni Blackett-Felix is a professional educational therapist