Written by Ginny Grant and Melanie Heyworth
In our previous piece, Introduction to Autism, Part 2: Next steps after a childhood diagnosis, we emphasised the need to pause following an Autism diagnosis – to sit with your child’s Autistic identity and embrace it with the unconditional acceptance that your child deserves. So, when you feel you’ve reached that place, what next?
You will no doubt already be feeling the pressure to embark on a host of therapies and interventions that might have been recommended to you at the time of your child’s Autism diagnosis. However, with your newfound unconditional acceptance of your child’s Autistic identity, how do you identify therapies, therapists, and goals that will respect your child’s Autistic neurology?
Our stance on therapies and interventions
For those who are new to our community, Reframing Autism takes a strong stance on therapies, and we don’t mince words about our stance, either.
Reframing Autism acknowledges that many therapies can be beneficial to Autistic people across their lifespan to manage the challenges of living in a world that is not aligned to Autistic neurology. We support the use of therapies when they are approached from a strengths-based, citizenship framework and utilised to support an Autistic person to thrive authentically.
Yet we know – from the many testimonials of Autistic people and the emerging body of research – that some therapies and interventions have the potential to cause significant harm to Autistic people. These include any therapies or interventions which suggest that non-autistic neurology is preferable to Autistic neurology, and which attempt to “normalise” Autistic people or suppress intrinsic Autistic behaviours to perform in a non-autistic way, or which are intensive in nature. Specifically, we reject Early Intensive Behavioural Interventions (EIBIs) and Applied Behaviour Analysis, commonly known as ABA.
So, this piece will assume that you are not taking an intensive or ABA approach to therapy. But remember also that ABA strategies may be employed within some allied health professions, such as psychology, speech pathology and OT, so be on the lookout for these. Reframing Autism rejects any therapeutic approach which uses a system of rewards and punishments to modify Autistic behaviours and “train” Autistic individuals to act non-autistically, regardless of whether a child enjoys the approach.
To learn more about our stance on therapies and interventions, please read our Position statement on therapies and interventions.
So, how do you know if a therapeutic approach or intervention will be helpful and respectful?
First of all, keep in mind that Autistic individuals are just that: individuals. Every Autistic person is unique, just as every human being is unique. Every Autistic person has their own set of strengths, skills and challenges, just as every human has their own set of strengths, skills and challenges.
When it comes to considering therapy options to support your Autistic child as they navigate a world built for the non-autistic majority, there is no set path.
Your child’s paediatrician and any allied health professionals you may have already engaged thus far will likely provide strong recommendations for the way forward, but before you commit your family to a packed program of therapy, remember that these are just recommendations. It is your choice as to whether to follow all of them right away, or in your time, or to take on only some of those recommendations, or to adopt none at all. These choices are all valid.
Some professionals may speak of a “window of opportunity” to achieve the best outcomes for your child. While it may well be true that some “windows” exist during which it is easier and/or quicker to learn particular skills among the typically developing population, those “windows” never close. Over time, as a child matures and develops, some skills may take longer to learn, or require different ways of learning, or even require us to unlearn some things before we relearn, but it is inaccurate to imply that a child will only able to acquire a particular skill by a certain age. So, if it does not suit you to begin therapy immediately, for whatever reason, that is just fine.
Also, you may wish to look beyond the conventional speech, OT, psychology and physical therapies to some of the other possibilities, such as art, music or animal-assisted therapies. Sometimes a child will not take to conventional therapies but flourish within the setting of a less conventional approach aligned with their interests.
Your team of diagnosing professionals may have made specific recommendations for therapy providers, but now it’s up to you to determine whether those providers will deliver those therapies in a way that respects your child’s Autistic neurology. Take your time in researching therapy providers. Seek recommendations of respectful therapy providers in local Autistic-led Facebook support groups (and note the “Autistic-led” wording there). Visit local therapy providers’ websites. You can often gain a lot by reading the home page and “About Us” section. Check out their social media accounts too. Look for signs that the therapy provider centres the child, respects their dignity, autonomy and authenticity, takes a strengths-based approach, and is pro neurodiversity.
When you visit a therapy provider for the first time, think of it like a job interview. That provider needs to demonstrate that they are the right fit for your child and for your family. Ideally, the therapist will engage attentively and empathetically with your child and listen carefully to your requirements and questions.
If there are red flags – talk of “normalising” your child would be major red flag, for example, or insisting on eye contact – this is the time for you to walk away, and to do so confidently, knowing your family’s values when it comes to the people with whom you choose to work.
When discussing a therapeutic approach, be mindful that therapy can be time and energy draining, not to mention very expensive. So, be sure to decide on an approach that suits your family’s schedule and support budget. Consider also that therapy can be very demanding of a child physically and emotionally, and your child’s willingness to engage in therapies and their stamina will also play a role here. Some families choose to engage in one or multiple therapies over an extended period, enjoying building a strong relationship with their therapists, while others prefer to do therapy less regularly, fortnightly rather than weekly, or in short blocks of six to twelve weeks, with the focus on achieving a very specific goal.
When it comes to goals for your child, the key to setting relevant, meaningful, respectful goals is to involve your child as much as possible. Any goal that is strongly informed by the child and is made with their input and consent, is more likely to be achieved, building child and parental confidence and motivation, maintained and generalised outside of the specific context in which it was learned – and a good therapist will absolutely recognise this.
The downside of involving your child in their goal-setting? Well, your own goals for your child may need to take a back seat for a while, as you accept that they are simply not motivating for your child at this point in time. Take heart, however: this does not mean your child will never achieve those goals.
Learning is lifelong: children, and indeed adults, never stop growing, developing, maturing.
If at any point you need to take a break from sessions, do not hesitate to discuss this with your therapy provider. Your therapist should understand that families can become strained by busy therapy programs, physically, emotionally, and financially, and would face this situation regularly. You can always pick up on the work you were doing, or new goals, down the track when you’re feeling more up to it. (Note: there may be a requirement around giving notice of ceasing appointments, so be sure to check the provider’s customer policy or any agreement you may have signed when commencing with the provider.)
Finally, remember that there is no substitute for the lived experience and reality of Autistic people themselves. Autistic people are the experts in living Autistically.
Continue to access Autistic voices through blogs, social media accounts, Facebook groups, webinars and books. (Not an Autism Mom’s 100-ish Books on Autism and Neurodiversity is a great place to start.) If you have questions about your Autistic child, the Autistic community will more than likely wish to help you understand.