Profound Autism: Understanding a New Category for Care

Glynnis Olin, Office Administrator & Blog Writer 

Our understanding of the human mind is ever evolving. Last December, The Lancet Commission on the future of care and clinical research in autism published research that found that somewhere between 18 to 48% of the 78 million people with autism today are estimated to fall under a new, distinct category: “profound autism.” Profound autism, which is on the more severe end of the broad and complex ASD spectrum, is classified by exceptionally high dependency. Most people with profound autism – a classification that is reserved for people ages eight and up – require 24/7 care and are minimally or non-verbal. As a result, people with profound autism are often unable to advocate for themselves. And as our understanding of their needs continues to evolve, so must our methods for providing them the best possible care and support. 

This new classification further clarifies what we already know – that there is not one single type of autism, nor are there universal treatments and supports that apply to all autistic children. From elementary school through high school, children with profound autism will likely always require a designated caregiver, whether in the classroom or at home. But many of the predominant methods for teaching and caring for children on the ASD spectrum work from the outdated assumption that all autistic children have the same needs. One common way to accommodate children with autism who struggle with writing by hand is by allowing students to record spoken answers or dictate to a scribe, but that modification would only increase the frustrations of a child who cannot communicate verbally. Children with profound autism have higher and more specialized needs, and they deserve the education and care infrastructure that best supports them – such as AT devices that incorporate a keyboard of letters, words, or other visual symbols to aid communication. 

Now, it is understandable that existing models for care may be outdated – after all, most of them are guided by research that was conducted years ago. But as new science emerges, we must update and reconfigure our approaches, actions, and institutions in real time. We are finally beginning to better understand the challenges that have always existed for children with profound autism – and today, we have the resources and tools at our disposal to help these children thrive at home and in the classroom. As we continue to update best practices, we must be ready to include the perspectives of autistic people and provide them with the services they require to get the education they deserve. For profound autism in particular, careful clinical trials are crucial. We have a way to go in discovering how to provide 24/7 care most effectively to these children – whether with a classroom para, home health aide, and/or parent training. But, as with the ASD spectrum more broadly, profound autism is not one-size-fits-all when it comes to treatment and support. Severity and unique personality traits will need to be carefully assessed by a neuropsychologist for every child, to figure out the most appropriate way to provide round-the-clock care.

The Lancet Commission supports what is known as “stepped care”: initially providing services that come at the lowest cost to the family, and then adding more intensive treatments and support as needed. For most families, adding those intensive services that many profoundly autistic children require – such as a specialized private school or an ABA provider with focused expertise in non-verbal communication – is not financially feasible. That’s where we come in.

At the Law Office of Michelle Siegel, we are here to help voice the needs that your non-verbal child cannot express on their own. We will fight for your child’s right to the consistent one-on-one support they may need to succeed. And while more research is required to identify the best methods of care for children with profound autism in education, our firm will always be ready to advocate for the most cutting-edge scientifically backed treatments and services.

Please stay tuned for an update on the next big steps our firm will be taking to support families of children with special needs!

 IDEA: A History 

Glynnis Olin, Office Administrator & Blog Writer 

Today, children living with disabilities are guaranteed a free and appropriate public education (FAPE), including special education and related services, under the Individuals with Disabilities Education Act (IDEA). This means that no matter what disability-related accommodations a child requires to succeed in the classroom, they are legally entitled to them. These protections have evolved tremendously over the past several years, but there was a time – not too long ago – when they didn’t exist at all. 

Then came the Education for All Handicapped Children Act (EHA) of 1975. The EHA was created to support children living with disabilities who were excluded from the U.S. public education system. The original core principles of the EHA included federal assistance to guarantee FAPE in the least restrictive environment (LRE) for all children with disabilities, and the protection of the rights of these children and their parents. These founding principles remain in place today and live on through the law that replaced the EHA in 1990: the Individuals with Disabilities Education Act (IDEA). 

One of the millions of American children who struggled to navigate the world of education before the EHA and IDEA was Frank Harkin – brother of U.S. Senator Tom Harkin, a champion of education accessibility through his advocacy for both the IDEA and the ADA (Americans with Disabilities Act). Deaf since the age of five, Frank was denied opportunities within his local public school district because students with deafness were not guaranteed any classroom accommodations. Instead, Frank was forced to board at the Iowa School for the Deaf, which was over two hours away from his home and family. On top of the trauma of being given no choice but to leave his family, he was later presented with extremely limited employment opportunities upon graduation. He never had the chance to reach his full potential. 

Fortunately, in 2022, children living with disabilities in the U.S. have a whole world of opportunity before them thanks, in part, to the IDEA. The law provides states with special education grants that support programs such as early intervention (EI) and related services. Further, the IDEA funds agencies and organizations that conduct research and development related to special education support – institutions that would have fundamentally changed Frank’s childhood for the better. 

Over the years, Congress has reauthorized and evolved the protections of the EHA and IDEA. The EHA introduced early intervention services and Individualized Family Service Plans (IFSPs), which are used to customize special education and related services for children under three. But it was the 1990 reauthorization of the EHA, the same one that changed the law’s name to IDEA, that introduced a new group of protections for students. Through this, the IDEA finally recognized traumatic brain injury and autism as disability categories and mandated the development of individual transition plans (ITPs) for students with IEPs to help them adjust to post-high school life. Subsequent versions of the law also expanded the definition of developmental delay to include students up to age nine, required instructors of children with special needs to use research-based interventions, and solidified the resolution process for due process complaints, in addition to addressing how best to assist people with disabilities in obtaining employment. 

Here at the Law Office of Michelle Siegel, we are carrying the IDEA’s legacy forward. We advocate for equal access and educational opportunities for children with disabilities, so your child has every accommodation they need to thrive in the classroom. We help children get the FAPE to which they are entitled by helping you navigate the IEP process and, should it prove necessary, secure funding for more specialized supports. Like the IDEA, our firm adapts to children’s changing needs throughout their development. But it’s not just about the law itself – we also foster a collaborative and compassionate culture with our clients and their schools. 

As we look to the future of children’s educational rights, we hope to embrace increased inclusivity and support for all children, regardless of disability, identity, or background. As the IDEA’s 2017 reauthorization reflected a movement toward increased respect for children with disabilities by, for example, removing demeaning labels like “mental retardation,” we will help ensure your child is not defined merely by their IEP classification.

Coping in the Midst of COVID-19: Mental Health Tips & Resources

When the coronavirus outbreak began a little over a year ago, who could have predicted how much it would change our lives? With school closings and new financial pressures, we’ve all struggled to navigate this new way of living. What’s more, our families have been forced to adapt to the pandemic so quickly that we’ve hardly had time to process its mental and emotional ramifications. And while about 27 million Americans have been diagnosed with COVID-19, so many more have been grappling with the social isolation and mental distress that it continues to leave in its wake.

Over the course of the pandemic, many of our clients have expressed that their families have been negatively impacted by the pandemic. After all, there is a glaring lack of support for parents caring for children with special needs during a once-in-a-century pandemic. 

Below, we’ve compiled some resources designed to make life just a bit easier for families and children with special needs.

Mindfulness and Routine for Daily Calming

Guided imagery is a form of mindful relaxation that has been shown to improve coping with uncertainty and anxiety. Often used to help people prepare for medical procedures, adapted versions of this technique can be used by children to calm their bodies and minds. A 2017 study by Anna Ridderinkhof of the Research Institute of Child Development and Education, University of Amsterdam, shows that mindfulness-based programs can benefit the emotional and social development of children with Autism Spectrum Disorder (ASD). CHOC Children’s guided imagery page consists of short audio visualizations for kids to help with relaxation, stress management, easing worries, and gaining peace of mind. 

While now is as good a time as ever to begin practicing mindfulness, its benefits can outlast the pandemic itself. This therapeutic technique can also help manage your child’s special needs related to pain management, breathing, and sleeping. Scroll to the bottom of the above link to access free guided imagery scenarios read by pediatric psychologists. Your child can listen on their own, or they can play them aloud and practice together with you for a mindful family moment.

Developing and keeping a routine, especially for children with ASD, is also an important way to bring a sense of normalcy and grounding to your child’s daily life. This can help your child’s mental health, as well as your own. Here is a YouTube playlist from Dr. Lisa Beth Carey of the Kennedy Krieger Institute that shows different ways to make visual schedules – but keep in mind these were made by teachers with access to school supplies. You can adapt these methods to the resources you have on-hand – whether that means making a Google Doc that your child can access on a tablet or laptop, or simply using a pen and paper!

Movement and Art

Getting in those daily steps is especially hard during COVID. But physical activity is closely connected to our children’s mental and emotional well-being. According to the University of Rochester Medical Center, regular physical activity can improve your child’s cognitive health, social skills, and self-esteem, which are especially important when your child is learning from home. Socially distanced and masked walks can help with feelings of isolation from friends and classmates, in addition to helping your child’s overall physical fitness. And for the moments when you can’t get outside and walk, YouTube’s Yoga with Adriene has a playlist specially made for kids (and adults!) who are now distance learning. In addition, GoNoodle has a website and app that provides physical activities and games for your child to take advantage of any time at home.

Finding a creative outlet is another way for children with special needs to release some energy while quarantining. It can feel especially challenging to find ways to occupy our time during COVID-19 – and the small size of many New York City apartments certainly doesn’t help. While you or your child may have experience with more formal art therapy, creating art at home can bolster mental health by alleviating stress, stimulating the mind, and offering a sense of accomplishment. This can be especially helpful for children with executive function disorder (EFD), attention deficit hyperactivity disorder (ADHD), ASD, and dyslexia who are experiencing boredom, frustration, and anxiety during COVID-19. So, grab the Play-Doh, pull out the crayons and paper, or listen to your favorite song and encourage your child to choreograph a dance!

For Parents

As adults, we need to remember that it’s important to take care of our own mental health, too — not just for our sake, but also because children pick up on adult cues. Easing your own anxiety is one of the best ways to help your child feel settled, according to Dr. Abi Gewirtz of the University of Minnesota.

Telehealth therapy can be very beneficial in overcoming your own anxiety and fear during COVID. The American Psychological Association’s (APA) COVID-19 Information and Resources provides frequently updated and research-based content specific to teletherapy and stress management. The APA has also produced a podcast on managing your mental health during COVID. NYC Well has free counseling services available via text, phone, or online chat, as well as an app library with suggestions specific to COVID-19 anxiety. New York’s COVID-19 Emotional Support Hotline is 1-844-863-9314. You can also sign up for video sessions with privately run services that match you with a therapist that you can text, audio message, or video chat for a fee – these can be located by an internet search.

Scheduling regular calls with family and friends can also help reduce feelings of social isolation, as can engaging with online forums like Understood’s COVID-19 Resources & Support. There, you can ask questions and read insights from other parents about family and home life, distance learning, new routines, and self-care during COVID. This is not a special education-specific resource, but it can be helpful to develop a sense of community with other parents.

Research by the Yale Child Study Center’s Amanda Mossman Steiner (2010) indicates that parenting a child with special needs can strengthen your flexibility and problem-solving in times of uncertainty. In such unprecedented times as these, your relationship with your child can be a source of resilience to embrace. You are probably dealing with the chaos better than you think, so don’t forget to give yourself a break, too.

• Glynnis Olin, Office Administrator