Diagnoses

Finding the right specialist who can assist in the diagnostic process and the where to from here can cause sleepless nights and in some cases a huge strain on the wallet. Here the difference between going via State or Private, well-off, with medical aid or budget is clearly seen and felt.

So if you follow the schedule in the Life Book you get when your child is born, the doctor will pick up on any developmental delays and will be able to take the necessary steps.

“Check-ups are done at six weeks, five months, ten months, 1 year and then every six months until they go to school”

Did you know that? I didn’t, nobody told me.

If everything seems too overwhelming, and it can be, I would suggest contacting Autism Western Cape, if you live in the Western Cape,  or Autism South Africa(i) for the rest of the country.

Autism Western Cape(i) has a wonderful team with many years of experience that will be able to help you with any questions. They also have stations at Tygerberg Hospital and Red Cross Hospital.

Referral process

State

If you visit the day clinic they will refer you to Tygerberg or Red Cross Children’s Hospital.

If you see a GP they can suggest you contact Tygerberg Hospital or Red Cross Children’s Hospital or see a paediatrician, or make a referral via the VULA app.

Here you can still decide if you want to follow the referral process of the State or go Private. If you stay in the system the team at Tygerberg or Red Cross will help with the application for a SASSA grant and to go onto the school placement list at a Government funded school. 

However, an appointment with one of the teams can take up to a year or two and placement at a school can take about the same time. Currently, about 90% of the families in the Western Cape are following this process.

Note: If you do go through the hospital, be prepared to have patience and lots and lots of patience. It can be tedious. For each department, you have to open a file, even when you already have one.

A note on the waiting list for the government schools: If your child is on the school placement list-  when they phone you for the assessments and follow-up assessment – go! Why? If you don’t go, they take your child off the list.

(UPDATE OCT 2023- Tygerberg’s Neuro-developmental Clinic only see kids between 0-6yrs. Thereafter, for any re-assessments (to be done every 3-4 years) it has to go via your local clinic’s psychiatry department. If the local psychiatry department cannot help, they can refer you to Red Cross DCAP, but only if you were originally seen by Tygerberg)

Private/ Medical aid

If you see a GP and you have medical aid, they will refer you to a paediatrician or Neuro-paediatrician and Psychologist/ Psychiatrist. They might suggest some private schools or can also assist with placing your child on the school placement list.

If your child is older and already in school, the teacher might suggest you take them to an Educational psychologist. The psychologist will suggest therapies like an Occupational therapist or treatment, depending on any other needs. Most Autistics are treated for other conditions like ADHD, OCD, social anxiety and behavioural issues, etc. because there is no “treatment” for Autism. Unlike families on the low-income scale, families with medical aid might not qualify for the SASSA grant, but you can claim any expenses in regard to your child’s Autism from SARS.

Ideally, for the most comprehensive assessment, it needs to be a multi-disciplinary team of a neuro-paediatrician, psychologist, speech therapist and occupational therapist, and it needs to be done over a two-week observation period. If your child only got a 45-minute screening interview with a psychologist or specialist, don’t despair, the school your child is referred to will have a multi-disciplinary team that will observe your child for that two-week period to assess whether placement at their school is appropriate. If not, they will refer you to the appropriate school.

Specialists

The creche gave me the contact number of a social worker from Jelly Beanz and she referred me to a psychiatrist at Christian Barnard Hospital. While I waited for a response, I emailed another doctor and made an appointment with the Psychologist.

I got a response from all of them at the same time, but due to cost and because of what I have read during my research into Autism, I went with the Biomedical treatment route. Biomedical treatment looks at the whole body, because the whole body is affected – all the systems. The clinical treatment is very mind-based, the psychologist mostly suggests medication. 

Sometimes you do wonder if you made the right choices in the beginning. You can always change your mind with your treatment plan – you need to do what is the best option for your child. Remember, people are complex and different, what works for one does not necessarily work for your child. It is not a race, no matter what the specialist says – be patient. Listen to your child, the whole of them.

Here is my list:

  • Deidre Strobel Audiologist and Speech Pathologist
  • UCT Autism Research(i) – They have a waiting period for joining their research program and they work together with the Red Cross Children’s Hospital.
  • Dr Jonda Kerner(i) – Developmental Pediatrician, gave the diagnosis of Classic Autism and referred to an Educational Psychologist, Carey-Lee Vermoter at the Kenridge Health and Wellness Centre(i)
  • Jelly Beanz Inc(i)Social worker Edith Kriel
  • Tygerberg Children’s Hospital (021 938 6549/ 4538) and Red Cross Children’s Hospital(i) (021 685 4103) – They will first set up a hearing test after which you will be referred to the Developmental Center. We saw Dr Cilla Springer at Tygerberg Hospital.
  • Dr LD Carew(i) – Child Psychiatrist at Christian Barnard Memorial Hospital
  • Dr Louise Lindenberg(i) – Biomedical/ Integrative medicine specialising in Autism and ADHD
  • Nutripaeds(i)Nutrition
  • Neurodiversity Centre(i) – the more expensive option to Autism Western Cape. Dr Henriette Saunders(i) and Dr Adri Van Der Walt assist from there.
  • Prof Pieter Fourie(i), also practice at Optima Rust en Vrede Hospital in Stellenbosch(i)

These are all mostly in the Northern Suburbs side of Cape Town, there are actually many more Specialists in the Southern Suburbs of Cape Town.

After diagnoses, areas that we are working on:

Language – It is coming along nicely. Some sentences. You can actually have a conversation now.

Eating – He has a very limited diet he has set for himself. Foods that he used to eat he no longer wants to eat and even those that were part of his “favourite” food are being refused. No veggies or meat, very little dairy. So you supplement as much as possible(i). Update 2018(i)

Behaviour – Social interactions like sharing, playing nicely with others, and manners. Some hand movements have developed and some sensory issues have.

Sensory Issues – Alex is Sensory Seeker(i). No, this does not mean he seeks attention, it means that he is craving more input to his senses than normal. Even though he might be a sensory seeker, he also has some Tactile Defensiveness(i), Vestibular Defensiveness(i) and Oral Defensiveness(i).