What to do when you discover that your child has autism

When my son, Jeremy [now 26] was a baby, I worried because he would sit rather floppily, content to play with the same toy in the same spot for hours, enabling me to get a lot of my pre-production work done. When I shared my fears with family and friends, they inevitably replied, “So he takes after his dad! Not everyone has to be as energetic as you. He’s a calm baby. Just be happy you can get your work done.” The paediatrician was not very supportive of my concerns, so I invited him to my son’s first birthday party. Seeing the contrast between my son and a room full of healthy babies, he was forced to face the facts that some tests might be in order.

There is so much more known about autism now than when my son was a baby. If you suspect your baby or child has autism, it is important to get a diagnosis because the earlier your child receives help, the better your child’s prognosis will be. Parents who are not familiar with autism may wonder, “What is autism, and what does it look like? How do I know if my child has autism?” These are good questions to ask.

Autism spectrum disorder [ASD] is considered to be a neurodevelopmental disability, meaning that it affects the functioning of the brain. It is characterised by difficulties in social interaction, verbal and non-verbal communication, and restricted and repetitive behaviour.

Autism typically appears during the first three years of life and is thought to be four times more prevalent in males than females. Autism is called a spectrum disorder because there are vast differences in how individuals are impacted—from severely impacted to those on the more able end.

Seeing the contrast between my son and a room full of healthy babies, the paediatrician was forced to face the facts that some tests might be in order

How does one diagnose autism

At this point in time, there is no medical test to diagnose autism. Any diagnosis is based on observable characteristics, that is, the behaviour that a person is exhibiting. Because of the nature of the symptoms, ASD is sometimes difficult to diagnose at a very early age. If the child is their first, the parents have no experiences with which to compare. Seeing other toddlers and children develop differently, they may start to worry. Sometimes parents will talk to their doctor about their concerns regarding the child’s lack of verbal communication and eye contact, his failure to respond to his name, and his obsessive attachment to certain objects.

In many cases, a baby will develop normally and then start to regress at around 18 months. These children are usually easier to diagnose because of the obvious difference  in past and present behaviours which parents and professionals can attest from looking  at  photos, watching videos, and comparing observations.

There may be medical issues as well. Some children have chronic ear infection whereas others may show allergic reactions. Many have intestinal issues—either chronic diarrhoea or chronic constipation. Or a child may have constant rages and/or sleepless nights.

Because of the nature of the symptoms, ASD is sometimes difficult to diagnose at a very early age

Often the parents may be concerned because their child is a walking encyclopaedia on a particular topic [such as trains], plays obsessively in the same way with the same toy, or will eat only certain foods. Perhaps it is the kindergarten teacher who notices that he does not appear to engage in conversation with his classmates and has a difficult time with any change in routine. Or a child may be considered “naughty” at school because of certain behaviours, and perhaps the parents haven’t noticed anything amiss because he is an only child, or they think that boys mature less quickly than girls. This may be true, but it is better to be sure and investigate your concerns.

The doctor may be hesitant to jump to any conclusions, because not all reported observations are necessarily objective and they can be interpreted in different ways.  Everyone knows someone who was a late talker. On the other hand, a parent may not listen to concerns voiced by a childcare worker, a teacher, or a neighbour. This is unfortunate because the earlier the diagnosis, the sooner the intervention and the better the prognosis.

How to be sure not to miss signs of autism

My advice to parents who suspect their child has an autism spectrum disorder is to:

• Follow your instincts! You are the expert on your child. Often mothers know or have a feeling that something is not right with their child.
• Take notes on whatever behaviours [see below] are of concern by keeping a notebook or a document, listing the behaviours and their frequency.
• Look at the CDC’s Act Early website http://www.cdc.gov/ncbddd/actearly/index.html Check out the Developmental Milestones appropriate for your child’s age range. You may want to print it out and use it as a checklist. This will be useful when discussing with your paediatrician. Another good site with a speech and language milestone chart is LD online at http://www.ldonline.org/article/6313
• If you have any concerns, voice them to your family doctor. Bring your checklist of observed behaviours.
• It is better to have your child checked out than to lose precious time waiting for him to “grow out of it.” If there are local autism organisations in your area or support groups, they will be able to provide you with names of professionals in your area who can assess if your doctor does not have any to refer you to.

When my son was diagnosed at age three, I was told to find a good institution for him, and forget about him

If your child receives a diagnosis of autism

• Seek out early intervention. Early intervention is the best intervention!
• Find local autism support groups. Other parents may be your best resource for finding professionals and other resources. As well, you will realise you are not alone, and you will have found a group of people that you know understand what you are going through.
• Read to your child and speak to him or her as if he or she understands everything. They many look like they are not paying attention—but they are. By reading to them, first with picture books as a baby then reading more age-appropriate books you will help your child make connections and create a shared moment between you as well. When my son was asked many years later how he learned to read he said “My mom reading to me, and Sesame Street.” Yes indeed, many of us autism parents are indebted to Big Bird and his friends!
• Make sure you are seeking information from reliable sources. Just because something is published on a website or in a magazine does not mean it is accurate. Stay away from websites that do not clearly state where the information listed comes from; who or what organisation has created the website; and their connection to whatever products or treatment they are trying to sell you.

Take it one step at a time and seek only what you are ready to assimilate. Focus on the present. Learn what you can, that will help you today or over the next six months. At this early stage, if you try to think too far ahead, you may feel overwhelmed. Do only what you feel capable of doing, and read only what you are ready to digest.

When my son was diagnosed at age three, I was told to find a good institution for him, and forget about him. Instead, I found a way for him to communicate, and learned all I could about autism so that I could help him. Eventually he graduated from high school despite being non-verbal and severely impacted by autism. Although he still requires support, he is now an accomplished painter [see www.jeremysvision.com], is beginning to earn money and has a life he feels happy about. Never give up on your child!