Understanding why my baby was the way she was, was the start of a journey of acceptance.
Thandi was a distant baby. She hardly seemed to care if I was there or not. Knowing very little about infant development
, apart from the regular motor milestones, it didn’t occur to me consciously something was wrong. But nevertheless, I felt uneasy with her.
Why wasn’t she doing what so-and-so’s baby was doing? Didn’t she love me? By the time she was 3, I was beside myself with frustration. It was then that I sought help, and she was diagnosed with autism. If only, I thought, I had known – and understood – sooner.
For some parents, hearing the diagnosis of autism is a relief. Usually, there have been years of wondering what is ‘wrong’, self-blame, arguments and pure despair. Hearing that there is some objective reason why your child is behaving or developing differently to his peers can feel like a huge weight off the parental shoulders. In other cases, hearing the diagnosis feels like the end of the world. Sometimes it is something between those two extremes. But no matter how the journey begins, it does lead to a better place. Shaking the guilt
The first thing to come to grips with after the diagnosis is: it’s not your fault. In the 1960s, scientists thought mothers caused autism by being emotionally unavailable to their children. Today we know that autism is hard-wired. The theory that vaccines are linked to autism has also been thoroughly debunked – so you’re off the hook on that score. There is nothing you could have done to stop your child from being who they are, and in time, you will see that they are exactly who they are meant to be.
The second thing is that it’s okay to grieve
. No, your child has not died, but in some ways, you will have to deal with the death of the dreams and desires you had for your child. Over time, there will be new dreams and new desires. But right now, it is really okay to just feel sad. It doesn’t mean you don’t love your child.
Once you’ve got your head around the diagnosis, read and find out all you can. There are some brilliant books on autism and some great resources on the internet. Other parents of children with autism are generally very ready to share their experiences and hints and tips they have picked up along their way. You can get in touch with other parents through a local special needs school or through Autism Action or Autism South Africa.
Next you need to plan a strategy for getting help. If you have not seen one already, you should consult a specialist paediatric neurologist or a child development specialist. There are some in private practice, but major academic hospitals will also have consultants. They can refer you to resources such as occupational therapists, speech therapists and physiotherapists. Therapy for autism is intensive and requires one-on-one interaction, so the costs involved can be very high. Work out what you can afford and weigh your options accordingly. There is always scope to be creative in terms of recruiting volunteers and family members to help out with therapy and care.
Investigate schooling. Many government special needs schools – especially those specialising in autism – have long waiting lists. The sooner you put your child’s name on the list, the more likely they are to get a place in the crucial early years
. If you change your mind about the school, you can always turn down the place.
Finally, and most importantly, spend time with your child. They might not show you they notice you are there, but they do. Find a way to connect on their terms. Try to enter their world and learn what makes them tick before you rush in to change behaviour. Sometimes that’s all that’s needed to set the ball rolling – for you and for your child. Have you met someone with autism?