What are autism spectrum disorders?

The term autism spectrum disorders (ASDs) is used to describe a group of development disorders that have similar features. ASDs are a "spectrum" because of the widely different manifestations autism symptoms can take. ASDs cause symptoms such as difficulty communicating and trouble with social interactions. They can also affect the regular functioning of the liver and of the gastrointestinal, immune, hormone, and nervous systems.

Autism is usually detected by the age of 3 years through certain warning signs, such as repetitive patterns of behaviour, as well as difficulties in social and communication skills. These behaviours and difficulties also range from mild to severe depending on the child or adult who is affected with autism.

Health Canada estimates that 1 in every 150 to 160 children is diagnosed with autism, and boys are four times more likely to be affected than girls. This means autism is more common than other childhood disorders that have been better understood and studied, such as type 1 diabetes, Down syndrome, AIDS, and spina bifida.

There is currently no cure for autism, and the causes of autism are still unclear. But studies have shown that autism may have a genetic cause and that it affects the part of the brain that regulates social and communication skills - making it harder for people with autism to connect emotionally with other people. Some other theories as to the causes of autism include problems with pre-and post-natal development, external environment, and immune deficiencies.

Parents will most likely be the first to discover this disconnect with their child, and the sooner you notice signs of abnormal behaviour in your child, the sooner you should take action. Although there may be different categories of diagnosis for autism spectrum disorders, they all share the same road to treatment and improvement: the earlier the diagnosis and the intervention, the better the chance of reducing and improving the symptoms of autism.

There are 5 main types of diagnoses under autism spectrum disorder:

  • autistic disorder: Autistic disorder, also known as "classic" autism, is characterized by 4 areas of developmental breakdown (see "Autism: the road from suspicion to diagnosis"):
    • social problems
    • language problems
    • behavioural problems
    • problems engaging in imaginative play
    In autistic disorder, the child usually begins by meeting all developmental milestones, and then for some reason shows signs of regression between 12 and 24 months of age.
  • Asperger's syndrome: This is a milder form of classic autism, and people with Asperger's syndrome can usually manage well enough in society. Asperger's syndrome is sometimes referred to as "high-functioning autism," meaning that children or adults diagnosed with this condition are able to do well in society. Children with Asperger's syndrome usually do not have language problems. They do however show problems with socializing and demonstrating repetitive manners.
  • PDD-NOS (pervasive development disorder - not otherwise specified): Children who fall under this category of autism are those who otherwise did not meet enough criteria for the other categories of autism. However, they still share some of the developmental behaviours and difficulties that are characteristic of autism spectrum disorders.
  • Rett's disorder: This is more commonly seen in girls. These children appear to develop normally until about 5 to 18 months of age. At this point, children diagnosed with Rett’s disorder experience a decreased rate in head growth, and lose any previously learned language. Coordination and social problems are also noticed.
  • Childhood disintegrative disorder (CDD): This condition is diagnosed around 2 years of age, when a normally developing child begins to lose already learned skills. This disorder, also known as Heller's disease, can occur in children as old as 10 years old.

To find out more, visit the Autism Society Canada website.

Autism: the road from suspicion to diagnosis

As parents, you should observe your child and note if once-normal learned behavior has begun to regress. If so, you should bring it to the attention of your child's doctor as soon as possible. There are also 3 main areas that you should pay attention to if you suspect that your child may have an autism spectrum disorder (ASD):

  • social problems, such as not responding to you, not making eye contact with you, and always wanting to be alone
  • behavioural problems, such as repetitively rocking their body or flapping their arms, crying or laughing for no reason, or tantrums
  • language problems, such as not being able to make sentences, having a flat or singsong tone, or slowly stopping talking altogether

In addition, the Canadian Autism Intervention Research Network (CAIRN) has put together some guidelines for what should be involved in the physical assessment process. As part of the guidelines for making a diagnosis, your child's doctor may ask you questions such as:

  • Has your child's head gotten larger or smaller?
  • Are you starting to notice that your child has more erratic sleeping patterns, trouble going to the bathroom, or a hard time controlling their bladder?
  • Is your child starting to show signs of hearing or vision problems?

You can use some of these guidelines beforehand to help you observe your child more closely and know what to tell your child's doctor.

Because autism is a complex condition that exhibits a wide variety of symptoms and degrees of severity, making a diagnosis can be difficult. If your doctor agrees with your concern about autism, he or she will refer you and your child to specialists, who will start arranging a series of autism screening and comprehensive tests to make a diagnosis. These tests will depend on your child's age, and children as early as 18 months can show early signs of autism and get tested.

If your child is not diagnosed with autism, your doctor may also want to rule out other mental health or genetic disorders that have symptoms similar to those of ASD. These include Landua-Keffler syndrome (LKS), phenylketonuria (PKU), tuberous sclerosis, and fragile X syndrome.

If your child is diagnosed with autism, try to stay calm, plan out next steps, and acknowledge that this is a positive step towards helping your child. Instead of channelling your energy into fear and anxiety, try to channel your energy positively to get your child on the road to treatment.

After the diagnosis of autism

Despite the gap between what we know and what we don't know about autism, a few things are for sure: autism is not the result of poor parenting, it is not infectious, it is not caused by vaccines, and it cannot spread from child to child, and there are ways for you as a parent to empower yourself and your child.

My child has been diagnosed with autism. What's next? Next steps include finding out what your treatment options are and building a medical and social support network for your child and your family. Going forward, you are going to work very closely with the team of health care professionals who will help your child relearn skills that they have lost or learn new skills they never had. Be prepared for long hours ahead for you as a parent, too. See "Getting help and support for a child with autism" to find out more.

Will my child always be this way? At this point, there is no cure for autism. But because autism is being diagnosed at earlier ages (from birth to 2 years of age), there is hope that this may lead to better intervention. And with regular observation and screening and a strong treatment program, it is possible for your child to grow up to lead a normal or near-normal life. This involves a consistent and multi-layered approach of therapies and support.

What kinds of treatment options are available to my child? Treatment usually involves a combination of behavioural therapies (such as speech therapy, occupational therapy, applied behavioural analysis (ABA), and physical therapy), along with educational or community interventions. And for some people with autism, there are also options for medication therapy for symptoms associated with ASD. Some parents are also looking into alternative therapy (e.g., song therapy, a change in diet, vitamin supplements), most of which still require further studies.

Getting help and support for a child with autism

The bulk of the hard work to care for your child with autism will probably fall on your shoulders, and sometimes that load can be overwhelming. Planning and getting prepared to walk through this journey with your child becomes very important right from the get-go.

Get informed and connected. Start by looking into intervention programs and activities that your federal and provincial government may provide. The Health Canada website has further links to community workshops and services that will connect you to other families who are in your situation.

Get comfortable with the treatment program. People with autism vary greatly with the symptoms that affect them. Your child's doctor and other health care professionals (including speech therapists, occupational therapists, and psychiatrists) will recommend a blend of therapies that will fit your child's needs. Get comfortable with your child's treatment program - from being organized about therapy schedules to learning tips and therapeutic routines you can also apply at home.

Research your financial options. Because of the various therapies that are involved in an autism treatment program, it is important to have a financial resource plan. Check out what types of public financial aid and assistance are available to you (e.g., provincial health plans), what your insurance company may be able to supplement, and other autism networks that may provide financial grants and alternative solutions.

Expect lifestyle changes. Having a child with autism can mean many changes and sacrifices that your family will have to make. You may need to take out a second mortgage, take days off work to drive your child to and from their therapy sessions, change your family's eating habits, or add new safety measures and devices in your home. You may also want to consider getting your child an identification card or bracelet with emergency phone numbers.

Inform others. You can make the everyday experience better for your child with autism by speaking to their teachers, their caregivers, other family members, and even your neighbours, so that they are aware of your child's special needs and know what to do when you are not around. Explain to them how to communicate and respond to your child and empower them to connect better with your child.

Take care of yourself. This may come last on this list, but it is especially important and not any less significant. It is important not to allow yourself to get burnt out. Ask others to share your load so you can spend quiet time, alone or with your other half, to recuperate. Many parents also find it helpful to bond with other parents who are in similar situations. And it is a special bond, because it is built on the shared hope and tireless effort it takes to bring your child out of the world of autism and back into your world.