The Day That Changed Everything: Our Family's Autism Journey

I was five years old when I accompanied my family to a medical office where my younger brother Andy was brought into an evaluation room. Through a panel of one-way glass, I watched as he was surrounded by evaluators in a playroom. This wasn't like any doctor's appointment I could recall. Andy was red in the face, screaming with intense anxiety as these strangers tried to engage with him.

I could only take so much of this. I didn't know what I could do, but I would do anything to get my brother out of there. My parents rushed in after me, sensing a disaster in the making. They asked if we could all be present with Andy in this difficult moment, without detracting from the evaluator's assessment. With all of us by Andy's side, he finally began to feel safe. The evaluation was completed, and we left the doctor's office that day with a new diagnosis for him and a new word for me to process: "autism."

As a young child myself, I didn't understand everything that Andy's autism diagnosis meant for us as a family—but I knew that whatever was happening, our family dynamic was forever changed. At the time, it felt like it was for the worse...

But that couldn't have been further from the truth.

Here's that truth, with all emotion stripped away: my brother Andy was autistic—but his life was far from over. 

The Two Sides of Every Diagnosis

An autism diagnosis often changes not just the individual's life path but also the lives of those around them. This illustrates the two sides of every diagnosis:

1. Yes, Andy was autistic. 
2. But at the same time, he did not have to walk the path alone. Our family would always be there for him.

In this way, an autism diagnosis is often not just a life-changer for the individual but for the family as well.

Every Family's Journey is Unique

It's important to note that each family's diagnosis journey is unique. It depends on various factors such as:

- The age at which the diagnosis is received

- The family's culture and background

- Who is giving the diagnosis and how it's communicated

- The family's prior knowledge and experience with autism

The Do's and Don'ts Following a Child's Autism Diagnosis

As a child psychiatrist who has not only lived through this experience personally but also guided many families through it, I want to share some advice for those who have recently received an autism diagnosis for their child.

Do:

1.  Accept whatever you are feeling and give yourself time.

Whether you're frightened, shocked, or even relieved, all feelings are valid. Be open to whatever thoughts and emotions are coming up regarding the new diagnosis, and observe them without judgment.

2.  Accept the diagnosis.

The faster you accept that your child has autism, the faster you can fully support them. Accepting the diagnosis means accepting your entire child. This is a part of who they are now, and hopefully, you can be proud of it.

3.  Become more educated about Autism. 

You're part of the autism community now! There's a wealth of resources out there for parents just like you. Remember, this is a marathon, not a sprint.

4.  Speak with a School Psychologist, School Counselor, or Psychiatrist. 

If you have access to one, work with your child's school psychologist to ensure your child receives the support they're entitled to under federal law. If you don’t have access to one, then organizations like Easter Seals can also help you on that journey to find this help.

5.  Consult with your doctor about interventions or medication.

While autism doesn't need to be "fixed," there are interventions and medications that can help your child navigate a world that doesn't always value neurodiversity.

Don't:

1.  Try to do everything on your own. 

Reach out to your community, join support groups, and accept help that feels welcome when it's offered.

2.  Expect overnight success. 

Autism looks different for everyone. It will take time to figure out what works best for your child.

3.  Assume your child won't live a full life. 

Their life might look different from how you imagined it, but that doesn't mean it won't be full and happy.

4.  Feel guilty. 

There is no one to blame. Your feelings are valid, and you are doing your very best.

Remember, this diagnosis is not an endpoint but the beginning of a new journey. It's a journey that can bring challenges, yes, but also immense joy, learning, and love. As I learned with my brother Andy, an autism diagnosis can open the door to a life sweeter than you ever imagined.

Psychological flexibility is a great tool to better understand how readily your mind adapts to change, whether it's good or bad. It can help you, as a parent, recognize when something is out of alignment with your personal values and empower you to change it and accept help from others. This flexibility is crucial- allowing people to adapt in the healthiest way to expected and unexpected events, take on challenges, and recognize that everything is part of the life experience.

If you want a deeper understanding of your current outlook, I created a quiz that gauges your psychological flexibility and provides tips to help you navigate challenges by increasing your ability to respond to new situations, regulate your emotions, and be present with your family.

>>> Take the Quiz!

Together, we can navigate this path and create a world that embraces and celebrates neurodiversity.

For those who want to connect with other families on a similar journey, my online community Autism Roadmaps is open and accepting new members. 

Learn more!