Receiving a diagnosis of any kind is difficult for parents, and an autism diagnosis can be particularly frightening. The uncertainty about how to best support your child, and the confusion that can follow conflicting treatment advice, can be very unsettling. Hearing that autism is an incurable and lifelong condition tends to only add to the already overwhelming feelings that accompany an autism diagnosis.
It was no different for me when I learned of my grandson’s autism. Even though the initial feeling was one of relief to finally have a name for the challenging behaviors I faced as I was raising him, in the weeks that followed I went through a myriad of emotions—from anger to frustration, depression, and feeling overwhelmed. Thanks to the encouragement of others, I soon realized that indulging these negative feelings would not have a positive effect on him. He needed my help more than ever, so I had to pull myself together, accept the diagnosis, and get to work.
Working Through Grief to Acceptance
Many families go through similar emotions after first receiving an autism diagnosis as they mourn the loss of the hopes and dreams that they had for their child. One parent of an autistic child despairingly expressed it like this, “All I wanted was a normal son! Why couldn’t I have that?”
To this parent, and other parents of children on the spectrum, I would like to say, “Moms and dads, it is okay to grieve. Go ahead and cry, break down, and grieve your loss, even if it is just the loss of a vision in your head of what you thought your child would be and do. Work through your grief and disappointment to a place of acceptance and appreciation. Take a few days or even a couple of weeks to process the diagnosis. Just don’t take too long because there’s still a child there who needs that special bond with his mom and dad. Perhaps not in the conventional sense you anticipated, but maybe even better!
Things to Remember About Your Autistic Child
Then, when you are ready to jump back in, here are some key points to remember as you engage with your autistic child:
1. Normal is overrated.
The desire to be normal, or for your child to be seen as normal, is driven by worry about what “they” will think. This worry drives all of us to some extent and all too often leads to limiting ourselves and conformity to situations that deep down we wish we could leave behind. In the same way, if we do not give our autistic children the freedom to be their unique selves, we limit them. As Maya Angelou said, “If you’re always trying to be normal, you will never know how amazing you are.” And we will never know how amazing our autistic children are if we try to make them conform to what we perceive as “normal.”
2. Happiness means different things to different people.
Most parents’ answer to the question of what they want most for their autistic child when they are grown is, “All I want for them is to be happy.” It is important to remember that your concept of happiness may be very different from what makes your child happy. For you, it may mean that your child has meaningful social relationships. For your child, it may mean engaging in an activity on their own. It is also important to remember that while happiness is a state of being satisfied with life, no one is happy 100% of the time—and that’s okay. Find out what makes your child happy most of the time and meet them there, rather than projecting the things that you think will make them happy onto your child.
3. Allow things to happen naturally.
Many parents are actively involved in the parenting of their autistic children by providing needed interventions and therapies, but it is also possible to try too hard. In your sincere desire to see your child succeed or attain certain goals, you can be too forceful to the point where they become frustrated and discouraged by not being able to live up to your expectations. Be involved, encourage progress, but allow the child some space and to progress naturally and at their own pace.
4. Manage your expectations.
Most parents have expectations for their children similar to their own. A football player would like their son to be athletic if not a football player. An architect may want their child to follow in their footsteps and learn to design amazing structures. A nurse may hope their daughter also enters the medical field later in life. Seeing children excel in that way brings tremendous satisfaction to parents. However, your autistic youngster’s interests may be completely different from your own. Accepting and showing interest in their "enthusiasms" and giving your child room to develop and excel in those will enhance your relationship.
5. See your child through the eyes of others.
Sometimes the way we think others see our children, and the way they see them can be very different. In the desire for our children to be socially accepted, parents can sometimes feel a little embarrassed when their autistic son or daughter interacts in a unique way with bystanders. Maybe they talk a lot or ask too many questions, or perhaps we think the subject matter is not interesting to others.
This happened to me recently when my autistic grandson excitedly approached another table in the restaurant where we were having lunch. He’d been playing on one of the arcade machines there (his current special interest) and was so excited about reaching an unexpected and unusually high score, that he just had to tell someone besides me. When the conversation went on quite long, I worried that he might be disturbing the family eating their lunch, and I tried to signal him.
Later, having sensed my discomfort, the dad came over and told me how impressed he was with my grandson’s knowledge and enthusiasm over something as simple as reaching a high score. He found it refreshing and told me to never discourage that in him. It was a good reminder to adjust my expectations and appreciate these qualities in my grandson.
Seeing your child through the eyes of others can renew your appreciation for your child and their unique qualities and talents.
6. Love unconditionally.
Lastly, love your child not despite their autism, but because of it. Their uniqueness and special gifts and talents are extraordinary, and while they may differ from other neurotypical children, they are certainly not less. They may not be able to display empathy or conform to what we consider “normal”, but their often blunt honesty, kindness, and passionate enthusiasms are special.
Receiving and accepting an autism diagnosis is not easy. You may grieve, feel frustrated, and overwhelmed at first, but it does get easier. Autistic children need their parents’ acceptance and the special strengths and nurturing their parents represent. It takes time to start seeing the world through their eyes, but once you do, you will be amazed. Your child will teach you so much, and you will not only be a better parent but a better person because of all your child has taught you.
What has your experience been like accepting your child’s diagnosis? Please let us know in the comments below.
We hope you enjoyed the information in this article. STAGES® Learning also offers free downloadable resources to support teaching and learning with individuals with autism. Start with our free Picture Noun Cards and see our collection of other downloadable resources here!
*A Note from Stages Learning: Whenever possible Stages Learning uses the preferences stated by an individual as to whether to use identity-first (“autistic person”) or person-first (“person with autism”) language. In a poll of 21,000 people, 69% preferred identity-first language, and 31% preferred person-first language. A thought piece by Northeastern University indicated that in the majority of cases, autistic people themselves prefer to be called autistic people, whereas caregivers and professionals prefer the wording “people with autism.” We agree with the Northeastern article that the group being talked about should be able to dictate what they are called. As we move forward we plan to alternate our usage in our written materials and in our speech. We recognize the importance of this issue to so many people and we plan to revisit this issue in the coming years with the expectation that preferences will likely continue to shift and we will do our best to reflect these changes. We welcome your thoughts on this issue. Please feel free to contact us.
