Six Quick Tips for Finding an Occupational Therapist
According to Kristy Forbes, many PDA children are sensory seekers and need extra proprioceptive input, so occupational therapy can be a great place to meet those needs (in addition to rough-housing, trampolines in the backyard, and crash pads and swings in the basement). Yet, because there is still no recognized diagnosis of Pathological Demand Avoidance (PDA) in the United States, it can be extra challenging to find the right occupational therapy (OT) professional to support your PDA child and their sensory needs
Between the two of us, Caitie and I have physically toured clinics or interviewed practitioners at nine different occupational therapy centers, in four states/districts (Michigan, Maryland, Virginia, and Washington D.C.). Based on these experiences and interviews, we wanted to share some quick tips for finding an OT that might be a good fit for your PDA child, so you don't have to spend the same time and energy we did!
Does my child need a "PDA" or even an "Autism" diagnosis to do Occupational Therapy?
Not unless your insurance requires it. (Some insurance plans allow for occupational therapy without an Autism diagnosis, but you willl have to check your plan). In general, many different types of children can benefit from OT, including gifted children, anxious children, and neurotypical children who needs some extra support, so really a medical diagnosis is secondary to the child's specific needs in terms of whether it would benefit them. Many PDA families in the U.S. will start their journey (and occupational therapy) without any diagnosis or knowing their child is PDA, because it is a complex, not well-known, and not well-understood profile of the Autism spectrum. We both began our occupational therapy journey without formal diagnoses!
What type of OT clinic should I be looking for?
When looking for an OT, the ideal scenario would be to find an OT or an OT center that is not affiliated with an Applied Behavioral Analysis (ABA). This is because traditional Autism strategies that are based on behavior and compliance, such as ABA, will not work for the PDA child and can end up traumatizing them over time. However, we say this with a grain of salt, because we understand that in many areas of the country, ABA centers may be your only choice due to geographic constraints or what is covered by your insurance. Don’t despair, there are many good OTs at ABA centers, they just might be limited somewhat in their scope and style of practice by the focus on behavior of the ABA model, so please be aware of that.
What are some key words I should look for?
Some of the key words that are helpful when looking for an OT clinic or on the resume of an OT are: “child-led,” “play-based,” “sensory integration,” and “self-regulation.” This is in contrast to a more “skill-based” or “activity-based” clinic, where a focus on specific skills or particular activities in a linear progression can end up feeling like a demand that the PDA child rejects or refuses.
The key words are important becasue they indicate that the clinic will not be overly-focused on specific fine and gross motor skills, but rather the way that the child interacts, self-regulates, and integrates the whole body sensory experience. The body includes eight different sensory systems, which often overlap and interact with one another, and cannot always be separated out into discrete tasks such as hand-writing or stacking blocks. PDA children often have fairly good gross and fine motor skills when they are well regulated, but accessing these skills can fluctuate dramatically given anxiety levels, trust with the provider, and the degree to which they are masking.
What affiliations or certifications should the OTs have?
You can scope out a good fit for your PDA child by looking at an OT’s certifications, trainings and affiliations. Some easy signals that an OT would be a good fit for the PDA child is an affiliation with one of the following: ICDL, DIR-Floortime, Profectum Institute, or Star-Institute (best sensory research facility in the U.S.).
To find Profectum-affiliated occupational therapists in your state follow this link.
To find STAR-affiliated occupational therapists in your state follow this link.
If you find clinics that are full or not located near you, you can still call and see if they know of anyone else with availability or closer to where you live. Word of mouth works!
If you can’t find anyone through these links or word-of-mouth, you can ask potential providers: What do you think about the “DIR-Floortime” Model? or How do you work on Sensory Integration and Self-regulation? See if what they say vibes with you and your family.
What clinic features should I be on the look out for?
Any clinic that would be a good fit for a PDA child should have two features. First, it should offer one-on-one sessions between the OT and the child, because other children and unexpected sensory input during a PDA child’s session can be extremely dysregulating. Second, the OT should let a parent or caregiver stay inside the room during the session (we are aware that this may vary due to Covid, however, it can be helpful to look at their general policy). When doing occupational therapy with a PDA child, a parent or caregiver may need to co-regulate the child and even “share demands” in the case that they refuse to engage. This means you may have to actually do some of the swinging or climbing or playing alongside them. (Don't worry, it's fun!).
What should my first impressions of the clinic look like?
In the clinics where our children have had success, the initial session was less focused on getting through a set of skills, evaluations, or testing, and more about observation, getting to know the child, and establishing trust. It is especially important that an OT never force or cajole the PDA child through a series of fine and gross motor evaluations or tests if they are resisting. Rather, they can gently guide them to different elements of the sensory gym and see what resonates or is attractive to the child.
For example, in the first ever OT session with Cooper, he didn’t gravitate towards anything and refused everything, except a Lycra swing. About halfway through the session, he was finally willing to climb into the swing and so the OT just swung him for most of the session, without much verbal interaction. It was a great first step towards establishing trust with him.
Does the clinic need to know about PDA?
Not necessarily. What matters is whether the OT has a style that fits the PDA child’s way of being in the world, which is often the case for truly flexible, child-led, not diagnosis-focused OTs. (Extremely patient and playful are also great qualities!).
Although the OT doesn’t have to know about PDA, it is important that they be willing to learn. There are trainings about PDA that one can attend as part of their professional training through PDA North America (the cost is $350 for a certification, but they may be able to access this through continuing education credit) or simply spending some time on the PDA Society website. Because PDA isn’t a diagnostic category in the U.S. and most people don’t know about it, it’s OK if your OT doesn’t either, as long as everyone can establish good communication, know that it will be trial and error and might feel a little chaotic at first.
(Photo of William 2.5 years old with his occupational therapist)