You get thrown in the deep end when you first have a diagnosis or NDIS plan. You get recommended therapies – but how on Earth does it all fit in? Here’s 7 things I wish someone told me about therapies as we began our autism journey.
1. Therapies take time
I joke that our kids don’t do extra-curricula activities, they just do therapy. But it’s true. Not only do they not have enough energy to be scheduled in activities every night of the week. They also don’t have time as most of their after school time is taken up with appointments for therapy.
We have one school friend who has one or two activities after school every day. If it’s not language class, it’s swimming, pottery class, cricket, football, soccer, piano lessons, maths tuition or art class. The kid is scheduled with classes and activities from 8am until 5pm every day.
Our children miss out on lots of extra curricula activities. They don’t do evening classes or after school swimming. While it’s partly to allow them time to recharge, it’s also because our time goes towards the 6 different therapists they see between them. We might have up to 4 appointments each week.
Accepting that it’s important right now to put time and energy into intervention, and trying not to grieve for all the lost opportunities is part of the autism journey.
2. Book therapists a year in advance
I wish someone told me how to book the therapists in early and ongoing. When we started, I thought you’d just book a couple then see how it went before asking for more. But therapists are in short supply and so are appointments.
I now call up each therapist’s office around October every year. I ask if they’ve opened up their calendars/books for the next year. If they have, then I request the day, time and frequency of appointment for the whole year. I can always cancel, but it’s tricky to book more once the year’s started as calendars get booked out.
I have a pattern of days, times and frequencies to make sure no appointments clash. If speech is fortnightly on Thursday afternoons, then Psychology can be fortnightly or once a month on alternative Thursdays. If Occupational Therapy is Monday mornings, then the other Psychology appointments can be Monday afternoons. It takes some care to schedule 6 different appointments and therapists in, but it’s much easier to do it all at once and in advance.
3. Do the homework and get your money’s worth
Therapy for kids isn’t just a matter of dropping them at a therapists door, leaving them to chat for an hour, then going home. Parents need to be involved and listening carefully.
To get the most out of your investment in therapy, you need to continue working in between appointments. That might look like using the language or supports provided in a consistent way with your kids. It might mean spending time on ‘homework’ each night building gross motor skills or practicing regulation activities. It might mean reading stories and implementing visual schedules or social stories into daily life.
This is another aspect that takes time and relates to point number 1 – it’s almost a full time job providing support and getting the most out of interventions.
4. Sharing is caring when it comes to therapies
I wish someone told me how important it is to share and advocate for what happens in therapy. If there is a set of language, or exercises to work on, share it. Let school teachers know. Share with your extended family so they have the language, skills and understanding to support your child too. Print out sheets, link to websites that give good explanations, share common language used.
They say it takes a village to raise a child. Part of the role of a parent or carer of an autistic child surely is advocating for your child. That includes sharing what you learn in therapies and educating people that interact with your child.
5. It’s not about changing your child
There’s a bit of criticism about how society makes neurodivergent people adapt to a neurotypical world. Not only are neurotypical people generally able to adapt easier (so why shouldn’t they be expected to?). It also is anti-inclusive in that it expects neurodivergent people to fit in, rather than changing the environment to support and include them. This might include having more inclusive lighting levels (low light), noise absorption (low noise and removing loud bells or sirens), seating areas (hidden cubby style, for example), and sensory clothing/uniforms.
Therapy is not about changing your autistic child into a “normal” one. It’s not about removing who they are and eliminating their autism and its traits. It’s not about “fixing them”. Therapy is about supporting you and your child. It’s about giving ideas, structures and words to help you describe what’s happening and problem solving through it. Therapy can provide supports to enable a more successful, calm and understanding autistic life. It can help a child understand why they feel different, and give some strategies for how to interact with others in a way that they are understood. I think that if all our therapies have worked, our children will have enough strategies to be successful adults that live fulfilling and happy lives (whatever that looks like).
6. Knowing what therapists can and can’t do
There are many different types of therapy out there, and it’s sometimes confusing to know who or what you need. Some therapists specialise in different areas – it’s worth asking around to get the best fit for your child’s personality and what you need. I wish someone told me that therapists are all different and have different areas of specialisation, even with the same title!
Speech Pathologist
We found a Speech Pathologist that could teach Social Thinking. This helps with navigating social settings, understanding how to play and work with others, and what non-verbal communication looks like. Other speech pathologists may focus on speech formation, how to talk, or speech difficulties. Find one that can support you the way you need.
Psychologist
Our Psychologists both support with big emotions and how to regulate. Our kids have different psychologists because they get along better with different people. Sometimes you need to ‘shop around’ to find a therapist that your child is comfortable with.
Occupational Therapist
We use Occupational Therapists very specifically, depending on our goals and needs. When one child developed a restricted beige diet, we found an occupational therapist that specialised in feeding. Their sessions had access to a kitchen and foods. They were set up to facilitate sensory exposure to new foods, prepare and cook with new foods, and eat within the clinic or home setting. A standard occupational therapist wouldn’t have access to these facilities.
Other times we have used an Occupational Therapist for addressing low muscle tone and gross motor skills. With experienced Occupational Therapists, they may also be able to adapt to other areas such as executive functioning as your child grows. Initially, we found an Occupational Therapist who specialised in toileting because that was a goal we had. Again, not all therapists will have expertise in all areas so you need to ask around.
It’s worth taking the time to find a therapist that exactly meets your needs and goals. We had one generalist Occupational Therapist who just did very general sensory diet activities each session, and this didn’t have as much of an impact as more targeted supports. We ‘wasted’ a year with this therapists and didn’t make much progress against our goals until we found someone specialised.
7. Look after yourself too
You may be booked out with therapies for your kids. But don’t forget yourself. Having your own psychologist, or booking some sessions as parent-only, provide you with a chance to be supported and debrief too. It’s emotional and exhausting parenting tricky kids. You need support and self-care too.
Conclusion: What I wish someone told me about therapies
It’s a long journey, made easier with supports. I wish someone had told me that
- Therapies take time and will probably replace extra-curricula!
- You need to book appointments in advance and ongoing for a year
- You should put aside more time for ‘homework’ to get the most out of therapy
- Involving others such as family and school is important for maximum support
- It’s about providing skills and support, not about “fixing” or “changing” your child
- Different therapists have different skill sets, personalities and areas of specialisation. Ask around to find one that fits your child and the specific goals you have.
- Look after yourself and do a bit of your own self-care therapy.
Want to know more about how we use our therapists?
- 5 things our psychologists taught us to help with big emotions and more.
- 10 key concepts around Social Thinking that our speech pathologist helps with.
- 7 key concepts that our occupational therapist feeding specialist uses to help with restrictive beige diets.
- 7 different things our occupational therapist has supported with.