Providing Hope to Parents of Children with Autism

Understanding the Role of a Family Autism Consultant

Okay, who has heard this one? I have heard it one too many times and now have to write about it. As a family autism consultant, I work every day with parents, helping them navigate the complexities of autism from initial diagnosis into adulthood. I understand parents. Sure, I recall being scared of saying the wrong thing or offering inadequate support and even thinking (I hate to admit) that I knew more than they did. However, I have never said, "Let's not give parents too much hope." Such a statement is utterly absurd, especially when addressing parents of a child with a disability. Isn't our role to provide hope?

Parent and child in an embrace

Celebrating Small Victories

When parents express excitement that their young child with autism can read, I don't respond with skepticism or disbelief. I share in their enthusiasm. I don't dismiss it by saying, "That's not really reading; it's just decoding." Instead, I celebrate that their child is decoding, a fundamental step in learning to read! I applaud their joy in their child's development, regardless of how different it might appear.

You might be a staunch academic about reading, familiar with typical learning methods. However, the process can be quite different for an autistic child. We recognize that development varies, which is why autism is diagnosed. So why can't they learn to read differently? Why can't they excel in certain reading areas and take longer in others in a unique sequence?

The Importance of Communication Tools

When a parent is thrilled that their child is learning to use a letterboard for communication, I don't see my role as casting doubt on their progress. Why would I do that? What benefit would skepticism bring in this situation? I certainly believe that it is a huge breakthrough for some autistic individuals. I also know that current research and even the American Speech and Hearing Association is against it.

But do you know that parents don't immediately turn to letterboarding? They've endured underfunded school systems that lack adequate support and often push outdated augmentative and assistive communication. These parents know their child has more potential than those they were advised to trust seem to realize. Their turning to letterboard screams the fact that they are incredibly resourceful, resilient, and driven to support their child even if it isn't in a popular manner.

Balancing Skepticism and Support

You might think I sound reckless with parents, allowing them to pursue every new option. Not at all! I am a proudly skeptical professional. If something seems like a money-making scheme, I not only avoid it but also warn parents (see my blog about ABA, for instance, as a money-making scheme).

Providing parents with hope doesn't mean you have to believe everything they say. It means listening, investigating, and understanding the source of their joy and excitement.

Consider These Two Scenarios

The parent says, "My child is learning to use a letterboard to communicate."

Scenario 1	Scenario 2
An autism specialist/speech pathologist/teacher/occupational therapist says "I view letterboarding as akin to facilitated communication, which was debunked years ago. You should stop letterboarding and use this iPad app instead. Your child isn't communicating; you're likely guiding their hand without realizing it."	An autism specialist/speech pathologist/teacher/occupational therapist says "I've researched and am familiar with letterboarding. What aspects of it seem beneficial for your child? How does your child respond to letterboarding? What do you think is working for them and why?"

Scenario 1 is dismissive and shuts the parent down. They don't feel heard, seen, or validated for the years they've spent understanding their child, whom you've known briefly. Scenario 2 is validating, and you don't even need to offer an opinion! You can affirm their desire for more for their child and acknowledge that they see something others do not. By exploring their reasons, you learn much more about the child and parent than if you simply dismissed their efforts with letterboard professionals who, by the way, persevere through significant challenges to help individuals feel recognized.

The Takeaway

Stop saying we shouldn't give parents hope. You are missing the boat. Don't miss this learning opportunity as a professional to learn why a parent is telling you something. Learn why they are excited, then meet them where they are to guide them. If you are adamantly against letterboarding, for example, you have more of an opportunity to share your professional opinions if you listen first. Maybe you can bring in another complimentary iPad app while they still use the letterboard. Maybe they will find it more helpful. Maybe not. But if you shut them down immediately, they will not feel seen and most importantly, they will not see you as an ally that can help them or their child.

Embracing a Collaborative Approach

In conclusion, fostering a supportive environment for parents is crucial. It is about collaboration, understanding, and respect. By validating their experiences and exploring their perspectives, we can create a more inclusive and hopeful journey for families navigating autism.

The Role of Continuous Learning

As professionals, we must commit to continuous learning. This includes staying updated on research, understanding new communication methods, and recognizing the diverse needs of autistic individuals. By doing so, we can better support parents and their children, ensuring they feel empowered and hopeful about their journey ahead.

Building a Support Network

Creating a strong support network is essential for families. Encourage parents to connect with others who share similar experiences. This network can provide emotional support, resources, and valuable insights. It helps parents feel less isolated and more understood.

Conclusion: The Power of Hope

Ultimately, providing hope is about believing in the potential of every child. It is about recognizing that each journey is unique and that every small victory deserves celebration. Let's work together to ensure that parents feel supported, validated, and hopeful as they navigate the complexities of autism.