At ABS Kids, our mission is to empower children and families by providing access to high-quality care and essential resources.
In this week's Autism Weekly Podcast episode, host Jeffrey Skibitsky 
sits down with Dr. Alycia Halladay, Chief Science Officer at the Autism Science Foundation, to discuss profound autism, recent research advancements, and practical ways families can navigate the unique challenges of autism spectrum disorder (ASD).
What Is Profound Autism and Why Does It Matter?
Profound autism is a relatively new term used to describe individuals with autism who require significant daily support. Dr. Halladay explains that this term applies to individuals over the age of eight who have minimal verbal communication, intellectual disabilities, or a need for 24/7 care.
The goal of this classification is not to create division within the autism community but to ensure that every individual receives the specific resources and support they need to thrive.
One of the biggest challenges families face is the broad spectrum of autism, which can make it difficult to find tailored support. Some individuals with ASD may live independently and require social or executive functioning support, while others need full-time assistance due to severe cognitive and medical challenges.
Recognizing these differences allows policymakers, educators, and caregivers to develop better care models and funding strategies.
How Families Can Navigate the Complexities of Autism Care
During the conversation, Dr. Halladay highlighted key areas where families can take action:
- Whether a child will need residential care, job training, or independent living support, families should start planning early. Many services have long waitlists, so early application is crucial.
- Many individuals with profound autism experience co-occurring conditions like epilepsy, gastrointestinal issues, or self-injurious behaviors. Ensuring access to specialized medical care can significantly improve quality of life.
- Autism services should not follow a one-size-fits-all approach. Families should work closely with therapists, educators, and policymakers to ensure their child’s needs are met.
- Families often struggle with finding community engagement opportunities. Dr. Halladay emphasized the importance of accessible recreational programs, social skill groups, and tailored employment opportunities to foster inclusion.
- Autism affects not only the diagnosed individual but also their family members. Siblings of children with autism may experience unique emotional challenges and require support. Providing siblings with education about autism, connecting them with peer groups, and involving them in their sibling’s care plan can create a more supportive family environment.
- Many parents and caregivers of children with profound autism face high levels of stress and emotional strain. Seeking out mental health support, whether through therapy, support groups, or self-care strategies, can be crucial in maintaining a balanced life while providing the necessary care for their loved one.
Why Research and Advocacy Matter
Dr. Halladay also shared how ongoing research is shaping the future of autism care. By participating in studies, families can contribute to the development of better interventions and policies. The Autism Science Foundation and ABS Kids are committed to using evidence-based approaches to improve the lives of autistic individuals and their families.
Research in autism is evolving, and understanding the genetic and environmental factors that contribute to ASD can help refine diagnostic criteria and treatment options. Participating in studies not only helps scientists gather crucial data but also provides families with early access to emerging therapies and interventions.
Breaking Down Barriers to Care
One of the most significant obstacles for families is access to autism care services. Insurance limitations, long waitlists, and a shortage of trained professionals can hinder timely intervention. Dr. Halladay stressed the importance of advocacy in pushing for policy changes that improve access to care. Families can get involved by:
- Contacting local representatives and advocating for better autism funding.
- Joining autism advocacy groups that work towards policy change.
- Raising awareness about the importance of individualized care models for different autism subgroups.
Building a Support Network
Caring for a child with profound autism can feel overwhelming, but families don’t have to navigate the journey alone. Creating a robust support network can provide emotional relief and practical assistance. Some ways to build a network include:
- Connecting with other autism families through local and online support groups.
- Seeking mentorship from parents who have experience navigating profound autism challenges.
- Partnering with local autism organizations that offer resources and community events.
- Engaging with professionals such as therapists, educators, and social workers who can provide guidance and expertise.
Educational and Vocational Considerations
As children with profound autism grow into adulthood, educational and vocational planning becomes essential. Some key areas to focus on include:
- Specialized Education Programs: Identifying schools that provide tailored learning experiences for children with profound autism can enhance academic and life skills development.
- Life Skills Training: Teaching essential life skills such as personal hygiene, cooking, and financial management helps prepare individuals for a more independent future.
- Vocational Programs: Identifying job training and supported employment opportunities ensures that individuals with profound autism can find meaningful ways to contribute to society based on their abilities and interests.
How ABS Kids Supports Families
At ABS Kids, we recognize that autism is a lifelong journey. Our commitment to expanding access to care ensures that every child and family receives the support they need, from early diagnosis to adulthood. We offer:
- ABA Therapy: Evidence-based interventions that help children build communication, social, and life skills.
- Family-Centered Care: Collaborating with caregivers to develop individualized therapy plans that meet the needs of the whole family.
- Advocacy Efforts: Pushing for policies that expand access to autism care and increase public awareness about the unique needs of individuals with ASD.
- Resources and Education: Providing families with information and tools to navigate their autism journey with confidence.
Understanding profound autism and advocating for tailored resources is essential in ensuring individuals receive the support they need. Dr. Halladay emphasizes the importance of research, policy change, and early intervention in improving outcomes for individuals with autism and their families.
For more, listen to the full episode of the Autism Weekly Podcast. Subscribe today to stay updated on the latest autism research, community stories, and expert advice!
Check out Autism Science Foundation website to learn more!
