Open letter from the parent of a child who has autism

An open letter to parents of children with autism.
An open letter to parents of children with autism.  Photo: Getty Images

Dear Fellow Parent,

You have just been told your child has autism and I know you are reeling from what you have just heard. Nothing can prepare you for the shock.

When I heard the news about my own toddler son, Noah Smith - he insists on being known by his full name - in March 2009, my brain froze and now, thinking back, I see what happened in that room as if I were looking down the wrong end of a pair of binoculars.

I had never come across autism before and I really knew very little. I think I assumed that all the 700,000 cases in the UK were like the stereotype from Rain Man: people who couldn't communicate much except through displays of anger and frustration. And at the point of diagnosis, neither my husband, Richard, a 46-year-old operations manager for a catering company, nor I had considered anything was different about our son. He was non verbal, it was true, but as our first child (we now have a daughter, Jennifer, aged four), we didn't know what to expect. He was certainly able to smile and focus on us. Life was good.

But then he started pre-school, and in January 2009 the staff started muttering about him not making eye contact or pointing, as well as not talking. They talked to us of "special needs", which was a surprise as we didn't know he had any.

A referral to a local child- development centre followed, and then came an appointment with a paediatrician. I was still assuming we were all looking for some fixable physical problem, like glue ear. But suddenly the doctor said: "How much do you know about autism?" I stared at her. "Enough to know that I do not want you to tell me that he has it," I replied.

I think the doctor expected me to break down in some way, but Richard and I both experienced a sort of adrenalin surge that filled our heads with questions. We wanted to know: where is he on the spectrum? What will it mean? Will he ever be able to speak? Answers were in short supply. The best advice we could be offered was that time would tell, apparently.

We left the consultation knowing only two things: that Noah Smith's life was going to be different, and that we had no idea what to do about that.

But what we actually needed was someone - a professional, a well-meaning amateur, anyone - to be able to look into the future and tell us that no matter what he had, no matter what it meant, our son was going to be OK. That being autistic simply means your brain is wired differently. It isn't wrong; it's just different.


You may also have been told that you will have to go through a grieving process for the child you thought you had. In my experience, this is rubbish. I never felt grief. Instead I experienced pure terror that I did not know what I was doing. I did know how to help him. I felt I had let him down by not seeing it.

Later we were recommended a textbook that taught us how to encourage communication in the hope that he might be able to learn to speak. And so, gradually, like most parents of children with an autistic spectrum disorder (ASD), we became home experts, figuring out what was best for Noah Smith, with input from a speech and language therapist and early-years teachers who taught him how to move from one task to another and follow a schedule.

Now he is in Year 5 at middle school and has good support. He enjoys school so much that every day he bounces out telling me what a fantastic day it has been. I no longer fear the future the way I used to. I know that with the right support, the sky is the limit for my funny, clever boy. But he is just nine, and there is still a long way ahead for me, and even farther for you.

So what can I tell you to help now? First, love your child with all your heart and soul, and resolve to understand the way he interprets the world. My son develops passions. Right now, he is into car alarms, the size of milk cartons and quoting from his favourite Tintin books. This doesn't worry me - I can see he is simply interested in the world around him so I go along for the ride. He has aspirations to become a farmer and go to agricultural college. He is tremendously excited about the future. More than anything, he knows he has an amazing brain.

Next, give them your undying respect for handling everything they have had to deal with up until now on their own.

Have faith in yourself. You can improve your child's experience immeasurably by learning everything about autism that you can. There is so much information now: read, read and read more. But be aware, as every child with an ASD is different you may find some books that don't seem to tell you anything about your child. Move on.

Every so often you will find a book that seems to have been written specifically for you, where you will go wild with the highlighter pen, take copious notes and send copies to your relatives, friends, the school.

Professionals with odd job titles will start making contact with you to book appointments. Be prepared. Make sure that everyone who comes to see your child tells you whether they are there simply to assess your child or to actually work with them. If it is an assessment, ask when can you see the notes and what will be done with the results. If they are coming to work with you both, how often will they come and what are they working towards? You may find that this information comes freely; other times you may have to press for it.

Ask as many questions as you can and ensure you take an email address and their assurance that you can contact them with any further questions you may have. If you think a support group would help you, join one.

Be selfish: if you are invited to an event that you feel your child may not cope with, spare yourselves. You may lose a few friends but I can guarantee you will hang on to the good ones.

More than anything, understand this: you are the most important person in your child's life and you can tread your paths together with happiness and love. Understand that autism is about having a brain that is wired differently. It is not wrong. Be brave and go for it.

With best wishes, Martha

The Telegraph, London