Assessing Therapy Options
The therapy marketplace is incredibly expensive, but don’t assume you can’t do some of what a therapist does. I have happily read books, followed the direction of therapists and performed thousands of hours of therapeutic activities without much help. However, there are protocols you can’t access without a therapist and some useful insights it would take a lifetime to work out, so it’s important to access those services. The best therapists teach parents how to work with their child independently. Fundamental to any kind of therapy is building trust with your child. Parents are best placed to establish that trust, but if that’s not possible, it’s better to find someone who is willing to make a long-term commitment.
When you first start assessing therapy, it’s useful to understand the differences between behaviourialist and developmentalist interventions. Early on, you may or may not bump into all the therapeutic options around. You might be persuaded to think, if it isn’t government funded it’s not worth considering. You might try something, only to feel like it isn’t working, but who are you to question a professional? The recommendations of other parents might guide you toward the approach that worked for their family. It’s important to be aware this environment will always be a bit political, because of the diversity in kids and because there are different theories in therapy, just as there are different treatments for medical diagnoses.
Behaviouralists look at behaviour and design activities to increase or minimise those behaviours. These approaches use extrinsic motivators like reward charts, time outs or consequences.
In autism therapy, this approach is more nuanced and might involve giving children a sensory experience they love after they perform a task like “point to green.” Great effort is given to identifying experiences that bring pleasure and motivation to autistic kids early in therapy, so they can be harnessed to motivate other behaviours like talking and facing stressors. Some programs recommend undertaking 20-40 hours a week of these kinds of activities with the child.
Children might be given scripts to rote learn for use in conversations. They might be coached to replace autistic movements like flapping with neurotypical movements like clapping.
In talking to an Occupational Therapist (OT) who was trying to steer me away from a dominant behaviouralist intervention, she commented, “I don’t think you need that approach – it’s a bit like ‘train the monkey’”. I’ve also read reflections of autistic adults who were furious about their childhood experiences in some of these programs. They actually found them traumatising. Some reflect they found the withdrawal of needed sensory input abusive.
In contrast, I’ve heard a mother describe how her child developed from being non-verbal through to attending a mainstream high school with in-class supports.
I have noticed some families start in these programs and then shift to developmentalist programs, after they have spent thousands and thousands of dollars, only to find their child is much more relaxed after making the shift.
Developmentalists try to understand why a child is displaying a particular behaviour and shape activities that help the child become more flexible and adaptable. They aren’t worried about disguising or minimising autistic movements unless they self-harm. They identify sensory needs, so they can help a child meet those needs in preparation for therapy. They use skills like active listening to assist a child process “big emotions”. They use experience sharing and imaginative play to build strong guiding relationships. They understand parents are best placed to teach social behaviours through modelling and so proactively educate parents through therapy too.
These approaches to therapy understand that autistic children wish to be in relationship, but their expression of that desire is different. Developmentalism acknowledges that, like neuro-typical children, autistic children experience intrinsic motivation and the desire to be valued members of families and communities.
I personally recommend developmentalist interventions like Relationshiop Development Intervention (RDI), because I have grown to believe that children do their best for people they love, and developmentalism supports unconditionally loving relationships. But it’s been incredibly useful for me to have both behaviouralism and developmentalism explained. Early in our journey, it’s fair to say I used both, but with a greater amount of time dedicated to developmentalist activities like imaginative play, music and craft. Only, for incredibly tricky, life-threatening behaviours I used consequences, because I was desperate and nothing else seemed to work.
I do wonder if behavioural therapies became dominant, because they were easier to apply the scientific method to. Scientific evidence is an important part of lobbying for government funding and establishing credibility. However, autism therapy is a really difficult area of research to meet the standards of randomised controlled testing. No two children are the same, ethics approval is really difficult and so therapy will likely remain a bit of an art form as well as a science.
However, if you are considering embarking upon an untested approach, make sure you are being guided by a trained professional, like a qualified OT, clinical psychologist or medical doctor.
GET SECOND OPINIONS
Take your child to see several different therapists in each relevant field, because there are many different approaches and it will increase the chances of you finding a better fit. For example, my son really benefited from techniques dismissed by our first OT. With hindsight, I think she was a new graduate who was worried she would lose my business if I approached a more experienced OT who was qualified to teach the technique.
Therapists who have a family member with disability often work with a strong sense of vocation and curiosity. They are often the ones who attend conferences, apply cutting edge technology and collaborate with other therapies in the hope they can help their own family member.
Some therapy businesses use a key worker model where the key worker provides ideas from all therapy disciplines. Sometimes they are a therapist, but sometimes they’re a social worker or teacher. I do not recommend this model. If you have the option, try to consult a specialist i.e. speech therapist, occupational therapist or clinical psychologist.
Also, when you are working with therapists, “break up” when you sense your therapist has no more to teach or is out of their depth. Break up politely, move on and make the most of ‘word of mouth’ recommendations. Once you have a diagnosis, rush to parents of children like yours and ask for their help. I’m hoping this website helps you, but it will never be comprehensive and shouldn’t be your only source of advice. Even if the advice you receive about a therapy is “it didn’t work for us,” you shouldn’t rule it out immediately. Co-occurring problems can be (though not always) the real explanation for why something didn’t work for another child.