Reflections on Mental Healthcare for Kids with Intellectual/Developmental Disabilities

By Jolene Sharp, Chief Strategy Officer, TN Council on Developmental Disabilities

My husband and I are proud parents to two amazing kids, ages 14 and 12. Our oldest is autistic and has ADHD and anxiety disorder. Our youngest has Down syndrome and ADHD.

Our journey with both kids has involved the need for mental health support. This journey is still unfolding, especially with our youngest child. We’re still learning what mental and behavioral health supports are available and what does and doesn’t work for each of our kids. Even as a professional working for the Council, I am far from an expert in this topic. I’m a fellow member of Tennessee’s disability community, and I am constantly learning from your stories as well as my own.

I am going to share a few observations about mental health from our experiences. While I wish I could offer more definite solutions, I’m hopeful that some of these reflections will resonate, prompt some new ideas, or offer encouragement that progress is possible. Many of you have similar or maybe very different experiences of your own. If you are willing to share your insights with us, we would welcome hearing from you. Email us any time at TNDDC@tn.gov.

A note about terms: the terms “mental health” and “behavioral health” are sometimes used to mean the same thing. In this article, I will use them differently.

I will use mental health to talk about my kids’ underlying mental well-being and support needs. This means how they are feeling in their mind and body, including:

  • Moods and emotions
  • Self-esteem and confidence
  • Resilience and flexibility
  • Tolerance for stress, unpredictability, and challenging situations
  • Energy levels (tired, calm, agitated, etc.)
  • Quality of sleep and appetite

I will use behavioral health to refer to ways their mental health needs show up in their external behavior. This means their words and actions. When a child is struggling with behavioral health, they might:

  • Cry or act scared
  • Shut down or stop communicating
  • Yell or say unkind things to others
  • Engage in self-injury
  • Show aggression towards others
  • Run away or try to leave a stressful situation suddenly
  • Refuse to do things they would normally be happy or willing to do

Observation #1: Parenting criticism comes with this territory.

My husband and I have faced recurring negative feedback over the years from well-meaning family members and professionals. They have sometimes blamed our kids’ struggles with mental and behavioral health on our parenting decisions. People have accused us of:

  • Neglecting one child because of the other’s disability
  • Not being firm enough in our discipline
  • Not expecting enough of our kids
  • Expecting too much of our kids

Even after years of fending off poorly informed advice, I still sometimes get rattled by this kind of criticism. I re-evaluate and second-guess. I am lucky to have a true partner in my husband, who helps keep me grounded as we find our path forward. We seek advice from trusted advisers and skilled professionals. We stay open to new insight and the need to adjust our approaches. But we also have to keep re-learning to let go of criticism that isn’t based in a real understanding of our kids’ strengths and needs.

Observation #2:  The disability community relies heavily on Applied Behavioral Analysis (ABA) therapy. The quality of ABA can vary widely, and reliance on ABA can sometimes keep us from trying other potentially helpful therapy options.

We have found that ABA is often the default recommendation for children with intellectual and developmental disabilities and behavioral health concerns. We’ve seen that some forms of ABA (or other therapies, too, depending on the therapist) can focus on changing external behaviors and miss addressing root issues. For example, we saw a therapist for our youngest child who spent a lot of time talking about managing anger. But I started to wonder: Shouldn’t we also be helping our child understand and process why she’s angry? We’re now using a play therapy approach to help her process her feelings about her disability experience.

Our youngest has needed behavior supports in school since her first year of preschool. We’re well versed in functional behavior assessments and behavior intervention plans, which rely on ABA. We’ve accessed many school behavior consultants over the years. Those who have been most helpful were the ones who understood how to identify and creatively address underlying needs. In fourth grade, an excellent behavior consultant worked with our child’s school team to adapt not just specific behavior supports but the overall environment and approach, with excellent results.

I would encourage families facing behavioral health needs to consider whether other therapies besides ABA (like cognitive behavioral therapy, play therapy, art therapy, mindfulness therapy, or other models of therapeutic support) would strengthen the toolbox. I also recommend paying close attention to the approach of the specific therapist. ABA has a challenging history, and outdated practices can be counterproductive.

Observation #3: Mental health resources vary a lot based on the presence of intellectual disability.  

While access to affordable mental healthcare is a major challenge for everyone, it becomes even more difficult for a child with an intellectual disability. Our oldest child does not have an intellectual disability. When he needed therapy, we were able, with research and recommendations, to find an excellent therapist at a nearby practice. She was well versed in autism, anxiety, and executive function-related needs.

It's been a different story for our youngest with Down syndrome. We spent years asking around for recommendations for a mental health professional who would take a child with an intellectual disability (ID). We finally found someone local who had a background with ID and was willing to see our child – only to find over time that this therapist’s disability perspective included some unhelpful ideas. It took months of searching to find a replacement.

There is a counter-point, though. Sometimes, getting financial help with the cost of therapies is actually EASIER for a child with ID. Our youngest qualifies for Katie Beckett Part B, while our oldest does not. The out-of-pocket expenses without Katie Beckett were staggering.

Katie Beckett is a program from the Department of Disability and Aging that helps cover disability or medical-related expenses for kids who qualify, even if the parents make too much money to qualify for Medicaid. For more information, visit https://www.tn.gov/disability-and-aging/disability-aging-programs/katie-beckett.html.

Observation #4: Raised expectations need to be paired with increased agency for our kids with IDD.

Several years ago, I read The Self-Driven Child by neuropsychologist William Stixrud and academic coach Ned Johnson. In it, the authors give the recipe for anxiety: high expectations plus low control. That’s had my wheels turning ever since.

Over the past generation of disability advocacy, we have focused on the need to raise expectations for what is possible for people with IDD. That has been so important, and it’s work that must continue.

However, I’m realizing how little control our kids with IDD often have over their own lives. Think about how much micromanagement they experience at school, and maybe at home, too. There is so much emphasis on compliance and following directions. There may be less emphasis on learning how to communicate their own needs and desires – including the right to say, “No.” Fears about safety may lead to very tight guardrails.

I’ve spent a lot of time thinking about some foundational questions:

  • Are we using creative and flexible approaches to make environments and systems more accessible to kids with IDD? Or are we just expecting kids with IDD to fit into rigid standards and settings?
  • Are we preparing kids with IDD to make more and more decisions about their own lives? Are we allowing them to take reasonable risks and make affordable mistakes?
  • Are we giving kids with IDD agency over their bodies (for example, asking before providing toileting assistance or other intimate care)?
  • Are we giving kids with IDD the tools to think about the kind of future they want for themselves and how to get there?
  • Are we giving kids with even the most significant support needs as much choice as possible about what their days look like?

Research is clear about how closely mental health is linked to having a sense of control over our own lives. This makes it vital for us as parents to see our job as the same for our kids with IDD as with any kid: to help them build the skills and experience to navigate life successfully on their own terms. That can and should look very different for each kid – especially our kids with IDD. But pursuing that goal may be the most critical tool we have in improving mental health for this next generation of people with intellectual and developmental disabilities.

Growing up is hard! All kids and young adults have times when they need a little extra help to work through problems, learn from mistakes and hardship, and develop healthy coping and relationship skills. Mental healthcare is an important resource for that journey. It’s my mission to make sure my kids with disabilities have the opportunities and supports they need to make their own journey toward the future they want for themselves.

Jolene Sharp has worked for the Council for 5 years. When she is not working or spending time with her family, you might find her on a neighborhood run with her dog or curled up on the back porch with a cup of coffee and a good book.