What to Expect in Your Child’s First Year After an Autism Diagnosis

Receiving an autism diagnosis for your child can feel overwhelming. The emotions you’re experiencing right now are completely natural – guilt, fear, uncertainty about the future. But here’s what we want you to know: your child can learn, and this is not the end of the world. It’s simply a new world, and you need to do your best to adapt to this world and lead a happy life with your family.

Understanding Your Emotions

When parents learn that their child has autism, they go through a whole range of emotions. The worst of these emotions is often guilt – constantly thinking about ways you could have prevented this from happening. Of course, these emotions are a natural reaction to a life-changing event. Eventually they will fade away and you will adapt to the realities of having a child with special needs. The pain will subside, but it will take time.

Having a child with autism can have a significant impact on parents’ mental health. Research has repeatedly demonstrated that parents (especially mothers) of children with autism experience greater stress, depression, and mental health difficulties than parents of children with other types of disabilities or no disability.

What Autism Affects

It’s important to remember that every child with autism is different. Not all children are equally affected by the disorder, and each child has unique strengths and weaknesses. Contrary to popular belief, many children with autism are very affectionate, demonstrate emotions, and have loving relationships with parents, siblings and caregivers.

Here are some areas that might be affected:

Communication: Language may not be developing properly (may be completely absent), words are not used in a meaningful way, child may use gestures or tantrums instead of vocal communication.

Social Interaction: Child may not show any interest in making friends or engaging with others, and may prefer to be alone; child does not understand social cues such as eye contact or facial gestures.

Behaviours: Child may be overly rigid, have difficulty with changes in routine, and may have obsessive interests; child may have tantrums that are triggered for no apparent reason.

Play: Child has an absence of spontaneous, purposeful or imaginary play and may instead engage in repetitive behaviours with items.

The Importance of Early Intervention

Due to plasticity of the brain between the ages of two to four (and slightly into the age of five) early intervention is key. Treatment must begin as early as possible; either prior to diagnosis or immediately after your child is diagnosed.

Over 30 years of research has now demonstrated that children with autism can learn using a specialized form of intervention based on the principles of Applied Behaviour Analysis (ABA). It is important not to feel discouraged – with the right intervention, your child can learn!

Taking Control of Your Journey

Don’t rely on the State and State services that may or may not eventually become available to you. You are in charge and you must do everything you can do right away while your child is still impressionable. The Ontario government does not provide immediate support – families often wait 2-3 years for funding.

Here’s what you can do immediately:

Your Support System Matters

Taking Care of Yourself

Imagine your energy and positive emotions as water in a pitcher. Each time you do something for your family a little water is poured out of your pitcher. Unless you take time to put something back – by taking a walk, talking to a friend, enjoying a movie – your pitcher empties. You can’t give what you don’t have in store.

Tips for caring for yourself:

Keeping Your Family Strong

Parents often fear autism in the family will lead to family breakdown. While autism undeniably brings additional stress to a marriage, break-up is not the norm. Couples who learn to communicate openly, problem solve together and comfort each other can strengthen their marriage.

What Comprehensive Treatment Looks Like

Effective interventions must have an individualized program based on your child’s skill-based assessment. Currently, the industry standard assessments and curriculum guides are The Verbal Behaviour Milestone and Placement Protocol (VB-MAPP) and The Assessment of Basic Language and Learning Skills – Revised (ABLLS-R).

The National Research Council suggests comprehensive programs should:

Finding Hope in Other Families’ Stories

Many families have successfully navigated this journey. As one parent shared: “Having a child with autism is not the end of the world. It is simply a new world and you need to do your best to adapt to this world and lead a happy life with your family. You need to remember that it could be worse. Your child is probably happy and healthy within his or her little world.”

Another parent found hope in their child’s progress: “Our son had no receptive skills, he was non-verbal, he ate puree foods for the first three and half years of his life and he did not play with toys. With IBI therapy and our persistent work at home, our son now understands everything that is said to him, he is talking, he is chewing and eating solid foods, he was toilet trained in less than 5 days and he has learned to play independently and appropriately with toys.”

Your Next Steps

The most important thing to remember is that your child can learn. While this journey will have challenges, thousands of families have successfully helped their children develop crucial skills through proper intervention.

Don’t wait for the system to tell you what to do. Take control and start the process on your own. Early therapy is the key to success.