I wish I knew this about autism 15 years ago

I wish I knew this about autism 15 years ago (when we started our autism journey)

The journey of becoming a successful autism parent can be a long and difficult one.  The early days can be a nightmare, to say the least.  Dr visits, understanding the diagnosis, navigating therapies, talking to schools, finding help, and choosing interventions…

“Difficult” is an understatement.  At times I remember it all feeling out-right impossible…. I remember feeling completely overwhelmed, sad, anxious, totally incompetent, scared, worried, frustrated, and a whole host of other emotions.

A freeing moment in my journey came when I decided to truly understand ‘what autism is”.  It meant not worrying about what other people were saying or telling me to do… it meant following my own gut and observing what my child needed and responded to.

A few things I do however wish I knew about autism 15 years ago when we started our autism journey:

  1. It would have been nice to know that most blogs are written from a singular perspective on autism and that they do not necessarily apply to my child.
  2. That social media autism support groups are not always a good place to find help or support but rather a place filled with people wanting to sell products or push agendas.
  3. I wish I realized sooner how cruel people can be when they are trying to make money. How the “sale” of a therapy or product becomes more important than the child and their future.
  4. It would have been nice to know that the “one size fits all” rule does not apply to autism.
  5. It would have helped to know that autistic symptoms or traits do not define a child’s ability to learn and develop.
  6. I would have benefitted hugely from knowing the learning cycles of children! Not just a child with autism but that all children learn, grow, regress, learn, grow, progress, and thrive…
  7. Had I known from the get-go that early childhood development and motor planning are as important as speech development or speech therapy – I would have started a more holistic approach to autism intervention at a much younger age.
  8. It would have been magical to know that communication is as important as speech and that the implementation of alternative communication should start the day the speech delay is identified.

In the beginning, trusting my gut was very hard especially when my instincts told me that the doctor’s or so-called experts’ advice was wrong. Know this: “get a second opinion when your gut tells you to!”

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Ilse Kilian-Ross

Ilse Kilian-Ross is the owner of Amazing K, a registered ECD and Partial Care Facility in Johannesburg. Amazing K is a private adhd school, autism school and therapy centre for children from age 2 - 6 years where learners receive the best of both the schooling and therapy world. The autism school offers Individualized Education Programs, Speech- and Augmentive Alternative Communication (AAC) therapy as well as a full and adapted Academic Curriculum.