Ask, and you will soon realize that everyone has a different answer to the question: “Who diagnoses SPD?” The question itself seems to presuppose there exists a single entity that possesses all the education, training, expertise, instinct, knowledge, and experience to definitively diagnose Hein-Chris; one specific set of professionals within the medical fraternity that single-handedly has the final (and only) say in setting up my child for the rest of his life.
When I visited our paediatrician a short while before Hein-Chris’ second birthday, all I could offer was a simple: “There’s something wrong with my child. I don’t know what.” I certainly didn’t realize, at the time, how very well I was being positioned - by mere chance - for what lay ahead.
The word “autistic” quickly filtered into our discussion, and that is when I was given - what I consider - a brilliant piece of guidance: The diagnoses of an Autistic Spectrum Disorder (ASD) is very sensitive and outside the realms of what our paediatrician (who happens to be a brilliant professor in paediatrics) felt comfortable diagnosing, and we were referred - by him - to a neurodevelopmental paediatrician.
(In South Africa, there aren’t very many of these and they are mainly to be found in Johannesburg and Cape Town. Recently though a neurodevelopmental paediatrician opened practice at Netcare St Augustine’s Hospital, and this is a significant boon for Durban and surrounds.)
Hein-Chris and I were on a plane for Johannesburg a short two weeks later to meet Prof Lorna Jacklin, a neurodevelopmental paediatrician with more than 30 years’ experience in paediatrics, paediatric neurology and early childhood neurodevelopment. She spent two hours observing Hein-Chris before diagnosing him with Sensory Processing Disorder (and ruling out autism). She wrote a detailed report and sent me back to our paediatrician - report in hand. Our paediatrician read the report with interest, referred us to an Occupational Therapist (OT), Kerry Evetts (who was experienced and well-trained in Sensory Integration) and asked her for a detailed assessment report to be returned to him as soon as possible. We saw Kerry quickly after, obtained the required report, and were back at the paediatrician’s surgery without delay.
Based on Prof Jacklin and Kerry’s assessment reports, our paediatrician was confident that Hein-Chris was indeed not autistic, but suffered from SPD, and that no additional assessments were needed at the time. We discussed a treatment plan, pushed it passed Prof Jacklin and Kerry, and once everyone was comfortable with the approach, we started treatment (i.e., occupational therapy once a week, to be increased to twice weekly as soon as Hein-Chris settled into the routine).
And just like that a culture of information sharing was fostered. I shared every report Kerry sent me, with our paediatrician and Prof Jacklin. When Kerry heard we’d be seeing Prof Jacklin (we typically visited her twice annually) she’d write a letter detailing progress made, to which Prof Jacklin would respond with additional suggestions and interventions that Kerry might incorporate into her sessions with Hein-Chris.
His Team of Experts took shape - very organically - all with a common goal to ease his endless battle with all things sensory.
Thus, when I offered steps in my first blog to see a paediatrician, a neurodevelopmental paediatrician and an OT to have your child diagnosed with SPD, it was not a made-up list, but indeed the exact course of action I was guided to take (by some brilliant medical minds) when first I started down this path. It was (1) our paediatrician, (2) Prof Jacklin and (3) Kerry - not me - who insisted on keeping the lines of communication open among themselves so as best to address Hein-Chris’ specific needs. I sense that this might be the single most important factor in Hein-Chris’ amazing success over the last four years.
In addition, I am sure that if an assessment by a clinical or educational psychologist, or speech therapist, had been required at the time the diagnosis was made, I would have been thus informed (and I am sure there are cases where this is indeed the case). However, at the time, all three medical practitioners agreed on the diagnosis and treatment, and we were off.
To this day, I share all Kerry’s (now Ashley’s) progress reports with the paediatrician and Prof Jacklin, but now also with an educational kinesiologist and a clinical psychologist who have since joined Hein-Chris’ Team of Experts when the need for their intervention was identified. What proved to be incredibly useful was that Hein-Chris was referred to specific practitioners based on his Team of Expert’s intimate knowledge of my little boy. There was no need for me to scurry around asking for references for good kinesiologists or psychologists. I was referred directly to the best there was for my child.
I sense the same benefit will apply if it so happens that Hein-Chris requires medication to deal with his anxiety somewhere down the line. He has a paediatrician and a neurodevelopmental paediatrician in his court, who both have extensive insight into his unique requirements. I will not have to present my child to an unfamiliar specialist and expect him/her to make an informed decision about how to medicate my child. The ground work has been laid. Whatsoever Hein-Chris needs, his Team of Experts are best position to offer.
“Who diagnoses SPD?” Based on my own experience, a dedicated team of medical experts/practitioners working closely together to provide Hein-Chris with the best possible care. They draw from a pool of shared knowledge which is second to none. I wouldn’t wish anything less for my darling boy.
Note: Prof Lorna Jacklin has since retired. My very best wishes accompany her. I will remain ever grateful to her for all she has done for Hein-Chris and our family.