What Do I Do Now? Dealing with an Autism Diagnosis at Any Stage, Any Age

Receiving an autism spectrum disorder diagnosis is a life-changing event at any age or any stage of life. For parents of young children, it changes their hopes, dreams and expectations for their child. It impacts the parents’ relationship with each, the family dynamic and relationships with extended family and friends.

• A diagnosis in the elementary school years can explain why friendships have been a struggle, why school has been challenging, or the reason for difficult behavior.
• Receiving a diagnosis in the teen and early adult years can add pressure to an already changing life that comes with growing up and leaving one’s childhood behind.
• The older adult diagnosis can be a sense of relief, offering an explanation for a lifetime of struggles but it can also cause an identity shift – how one defines oneself.

The question remains the same at any stage a person receives a diagnosis – where do we start? What do we do now? What kind of supports and services are available, how do we find them, and how do we access services?

Let’s explore each age and stage of life when a diagnosis is first received.

An Autism Diagnosis in the Preschool Years

Finding Services

Not all doctors will know where to direct parents for support services. When my son was diagnosed, I was given 5 pamphlets at the children’s hospital and told “good luck”. I didn’t have a clue where to find a service or what to even look for. Your first place of contact should be Early Intervention Services. Your local health region who provides health services will be able to direct you to the right person. You want to contact Early Intervention right away as there is often a waiting list to receive these services.

Many communities have a local autism society. These are often parent-run organizations and a good place to start to find information. Consider joining a support group because this is where you’ll meet other parents who have already accessed services. Parents can often be your best source on where to find services and what/how they are accessing them.

Establish a Communication System

In my opinion, this is the place to start because without a reliable way to communicate, there will be a lot of frustration and a lack of understanding how to meet a child’s needs.

Develop a communication system by using visual supports. These can be anything from digital photos of familiar objects and routines to pictures. (Note – there is a hierarchy to using visual supports. Start with using actual objects, then move to color photographs). Model how to use these supports. For example, if a child wants a drink of juice, use simple language and say “juice” then have the photo/visual handy and point to it. You can take the child’s hand and place it on the photo and say “juice”. Don’t worry about using complete sentences at this point. You just want to model using the visual with a word and a gesture such as pointing. One helpful website for using visual supports is Do2Learn.

Structuring Play Activities

Play will need to be structured if the child lacks imagination, manipulates objects (lines them up or moves them back and forth from one pile to another), or doesn’t include anyone else. You may need to model what to do with a doll and a doll’s house or how to build with blocks.

Play can also be a great way to get communication going. Try turn taking games like ball games or blowing bubbles. Turn taking situations teach patience, waiting, and reciprocity. Great books for finding games to increase attention, interaction, and for structuring play are Attention Games, Playing, Laughing, Learning, Small Steps Forward, and Stepping Out. Books are a great resource for learning about play because as adults, we often forget how to play.

Addressing Sensory Needs

Sensory dysfunction is often present alongside an autism diagnosis. There are two types of sensory processing challenges – oversensitivity (hypersensitivity) which leads to avoiding sensory input because it’s too overwhelming. The other is undersensitivity (hyposensitivity), causing children to be sensory seeking—looking for more sensory stimulation. Most children are a combination of these two. It’s important to address sensory needs as early as possible because regulation can help in many areas such as eating, sleeping, mood, and daily functioning. To learn more about sensory needs, have a look at this article which gives a good description and lists some strategies.

An ASD Diagnosis in the Elementary School Years

If your child receives an autism diagnosis in the elementary school years, you will want to set up a meeting with the school as soon as possible. The educational staff need to be aware of the diagnosis and may need additional training if they aren’t familiar with ASD. Each school board has different services, programs and supports. School boards will have a Student Support Services or Special Education Department. This can be a good place to start on finding out what a board offers. Ask what supports will be available and how the educational needs will be met.

Telling Your Child About Their Diagnosis

I’ve written about this topic several times. It is recommended that a child be over the age of 7 before they are told about their diagnosis. You will know a child is ready for the ASD introduction when they start asking questions like why are they different from other children. They may also start identifying with the diagnosis or asking questions after reading about it or hearing something through the media. The child may need an explanation as to why certain situations are difficult for them like peer relationships. They may need to develop self-awareness for future challenges like entering middle school.

Community Supports

Looking for ideas on community inclusion? Think about contacting your local YMCA or recreation center. If your child cannot follow group instruction, private instructors are often available for a nominal fee. We had to do this for both of our children with swimming lessons as group instruction was just too fast paced. Or consider Special Olympics which has chapters all over the world.

Investigate the offerings at your local autism society or the Association for Community Living as they often have family social events. Check out the library. We have enrolled our children in excellent free programs over the years.

Diagnosis in Teenage Years and Young Adulthood

Higher functioning individuals on the autism spectrum often go undiagnosed until high school or when school life ends and independence begins. When the routines and structure of school end and work or post-secondary education begins, young adults can start to feel the pressure. There are more decisions to be made, greater organizational skills required, less structure and an increase in social complexities. The parent-child relationship is often redefined at this stage of life. The young adult may want more independence from parents but may not understand how to do this.

Mental Health Issues

An autism diagnosis at this stage of life may be the result of reaching a crisis point after years of struggling in school, with relationships, losing a job, social isolation, or facing the demands of adulthood. It can be at the apex of this crisis that a diagnosis is pursued and received.

People with ASD often experience mental health issues. This can range from anxiety, depression, mood disorders, or obsessive compulsive disorder to name a few. Some medical professionals will say this is part of an autism disorder, but mental health issues have to be addressed for the best outcome for that person. Your local health clinic will have mental health services, or a hospital will have a Mental Health Services Department. Health Regions will also have Mental Health Services. Health regions can be found on provincial/state government websites under Health.

Two good books to read on this topic are The Guide to Good Mental Health on the Autism Spectrum and Mental Health Aspects of Autism and Asperger Syndrome.

Support Groups

It’s important to for a person receiving a late diagnosis to know that they are not alone. Most local autism societies will run teen or adult support groups. There are also on-line support options available. Here is a list of the groups on Facebook.

For information on receiving a diagnosis at this stage and what to do next, read this post.

At whatever age or stage of life an autism diagnosis occurs, take it one step at a time, one day at a time. It’s easy to get overwhelmed and try to do everything at once. This is a life changing event and with time and effort, things will fall into place. You are not alone; it just takes time to connect to the greater ASD community.