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autism speaks

Autism Awareness Month

By | NESCA Notes 2021

By Dot Lucci, M.Ed., CAGS
Director of Consultation and Psychoeducational Services, NESCA

So what? What does it really mean to have an awareness month and a designated day? April is Autism Awareness month, and this year April 2 was World Autism Awareness Day, established by the United Nations (UN) in 2008. In general, these designations are meant to bring awareness to ”causes.” You will see a lot of blue in April as blue is the color of autism spectrum disorder (ASD) awareness. There will likely be many federal, state and local municipal buildings, private homes, as well as national and international monuments bathed in blue lights. People will wear blue, there will be blue autism products to buy, and our air waves will be flooded with autism awareness commercials. In a typical year, many commemorative and educational events would be held. It is usually a time of celebration for people with autism as well as their families and friends everywhere. For instance, in pre-pandemic years, sports teams, movie theatres, museums, Broadway and other venues would host ASD-friendly days. Autism Speaks has its “Light it Up Blue” initiative and is celebrating this year specifically with its #LightUpWithKindness campaign. The United Nations (UN) has a different theme every year, and this year’s theme is The Transition to Adulthood.

When the United Nations established April 2 as Autism Awareness Day, it had high hopes.

In 2008, the Convention on the Rights of Persons with Disabilities entered into force, reaffirming the fundamental principle of universal human rights for all. Its purpose is to promote, protect and ensure the full and equal enjoyment of all human rights and fundamental freedoms by all persons with disabilities, and to promote respect for their inherent dignity. It is a vital tool to foster an inclusive and caring society for all and to ensure that all children and adults with autism can lead full and meaningful lives.”

Well said…but far from the reality of many individuals with autism and their families. If only our schools, communities and societies were as inclusive, respectful and welcoming as this statement. If it were today’s reality, many people diagnosed with ASD and their families wouldn’t have to struggle as much as they do on a day to day basis with stigmatization, discrimination and a lack of respect and inclusive opportunities.

Autism is a lifelong neurological condition that originates in childhood, and its presentation changes over time. Autism is a spectrum with social, communication, sensory and behavioral differences manifested uniquely in each individual. While we have come a long way in understanding autism, recognizing the breadth and diversity of those with it; embracing their talents, unique abilities and strengths; and addressing the day to day challenges that autistic people face. The UN’s vision is still far from a reality, and there is still much work to do.

It is my hope that during Autism Awareness Month, you become more aware. If you support the “cause” and buy a shirt, bracelet or puzzle piece and shine a blue light on your porch, that’s great – spread the word.  Take the Autism Speaks #LightUpWithKindness” campaign to heart do something to create a world that is kinder, gentler, more respectful and inclusive of autistic people with autism. Watch a movie about ASD, read a book by an autistic author, take the time to educate yourself and your children. If your child has autism, educate your child’s classmates, neighbors, family members and community members. If a child with autism is in your child’s class or school, connect with them and their parents. You are modeling for your own kids and those around you, so spread kindness, acceptance and inclusiveness. If you are an employer, connect with your local school district and offer to partner with them to provide internships for transition-aged youth with autism and maybe even hire them as employees! While this is a financially challenging time for so many, if you do have the means, donate and give to an ASD agency (whether it be locally-, nationally-, medically- or research-based, etc.) – whatever brings you joy. Donate your time at an autism support center.  There are so many ways to recognize Autism Awareness Month that go beyond the color blue – choose something that resonates with you and be the light! Be the light that goes beyond Autism Awareness to Autism Action, Autism Acceptance, Autism Access and Autism Advancement.

 

About the Author

NESCA’s Director of Consultation and Psychoeducational Services Dot Lucci has been active in the fields of education, psychology, research and academia for over 30 years. She is a national consultant and speaker on program design and the inclusion of children and adolescents with special needs, especially those diagnosed with Autism Spectrum Disorder (ASD). Prior to joining NESCA, Ms. Lucci was the Principal of the Partners Program/EDCO Collaborative and previously the Program Director and Director of Consultation at MGH/Aspire for 13 years, where she built child, teen and young adult programs and established the 3-Ss (self-awareness, social competency and stress management) as the programming backbone. She also served as director of the Autism Support Center. Ms. Lucci was previously an elementary classroom teacher, special educator, researcher, school psychologist, college professor and director of public schools, a private special education school and an education collaborative.

Ms. Lucci directs NESCA’s consultation services to public and private schools, colleges and universities, businesses and community agencies. She also provides psychoeducational counseling directly to students and parents. Ms. Lucci’s clinical interests include mind-body practices, positive psychology, and the use of technology and biofeedback devices in the instruction of social and emotional learning, especially as they apply to neurodiverse individuals.

 

To book a consultation with Ms. Lucci or one of our many expert neuropsychologists, complete NESCA’s online intake form. Indicate whether you are seeking an “evaluation” or “consultation” and your preferred clinician/consultant in the referral line.

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Massachusetts, Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

 

How to Advocate for Your Child

By | NESCA Notes 2019

By: Reva Tankle, Ph.D.
Pediatric Neuropsychologist

The Federation for Children with Special Needs in Boston offers a Parent Consultant Training course several times every year. I have been privileged to teach this group about Neuropsychological Assessment and the IEP Process for the past 15 years. While many people take this course to become Parent Advocates as a profession, it is just as common that the participants are trying to figure out how to best advocate for their own children.

The process always starts with a concern. Parents request an initial evaluation from either the school or a private clinician because they have a concern about their child’s development. They are looking to understand their child’s challenges, obtain a definitive diagnosis and most importantly develop a treatment plan that will ensure their child’s positive trajectory into the future. What I have learned from the many participants in this course is that they are hungry for information about what they should be doing for their children.

It is encouraging that there are so many resources available for parents to help them with some of these concerns. However, the sheer amount of information can also be overwhelming, as it can be hard to know where to start. And it is important that parents get started right away, as we know there is a great advantage in early diagnosis and intervention; especially when autism is suspected. But where does one start?

  • Assessment/Diagnosis
  • Education
  • Parent Support
  • Advocacy

If you suspect your child may be on the autism spectrum, organizations such as AANE, The Asperger/Autism Network, and Autism Speaks can help you find diagnosticians in your area. Your child’s pediatrician may also be knowledgeable about local referral sources for assessment for suspected learning or developmental issues. Finally, word of mouth referrals from those who have previously navigated the process on behalf of their own child is often another great resource to rely on.

Once there is a diagnosis, parents should educate themselves as much as possible about the needs of their child and the options available. Organizations such as AANE and Autism Speaks can provide a lot of the information parents need at this often stressful time if their child has autism. Of particular benefit, Autism Speaks offers a “100 Day Kit for the Newly Diagnosed Family of Young Children.” This step-by-step guide helps parents feel more in control and confident about how and where to start this journey.

For language-based learning disabilities, parents may find needed resources through organizations such as Decoding Dyslexia or the International Dyslexia Association. Whatever diagnosis a parent is facing on behalf of their child, there are resources to provide the education that is needed.

The internet provides so many resources to parents, which is both a blessing and a curse. How can a parent sort through it all and establish priorities? How do they avoid becoming overwhelmed? Parent Support Groups! It may seem like an overly simple solution, but the benefits of sharing with others who have gone through what you are going through are immeasurable. And not feeling like you are in this alone will give you the confidence to keep going.

Armed with a diagnosis as well as education and support, a parent is ready to advocate as needed. Organizations like the Federation for Children with Special Needs are there to help throughout the advocacy journey. Finally, a strong partnership between the child’s parents and school district is critical to ensure that the district understands the individual child, their unique needs and to know that they will work to provide the appropriate educational opportunities for the child.

It may not be an easy journey to embark on, but know there are wonderful resources out there to help make things smoother.

About the Author

Combining her experience and training in both pediatric neuropsychology and educational advocacy, Dr. Reva Tankle has particular expertise in working with families who are navigating the IEP process. Having participated in numerous team meetings over the years, Dr. Tankle is especially knowledgeable about the many ways that schools can support and accommodate students with special learning needs, information that she clearly communicates in her evaluation reports and in team meetings, if needed. She also has a great deal of experience in articulating the reasons that a student may need a program outside of the public school.

Dr. Tankle evaluates students with ADHD, learning disabilities, high functioning autism spectrum disorders, and neurological conditions, as well as children with complex profiles that are not easily captured by a single diagnostic category.

To schedule an appointment with Dr. Reva Tankle in Plainville, MA, or any of our expert neuropsychologists, please complete our online intake form

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton and Plainville, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.

Why the Autism CARES Act Matters

By | NESCA Notes 2019

 

By: Amity Kulis, PsyD
Pediatric Neuropsychologist, NESCA

The CDC estimates that 1 in 59 children are diagnosed with an autism spectrum disorder (ASD), and studies by Autism Speaks also found that children with autism have a nearly four times greater chances of having unmet health care needs compared to children without disabilities. With those sobering statistics in mind, it’s important for us to take a closer look at recent legislation to help the growing number of people with an ASD diagnosis.

On September 30, 2019, President Trump signed the Autism CARES Act of 2019, which was due to expire on the same day. Originally called the Combating Autism Act, which was established in 2006. It was reauthorized in 2011, and again in 2014 when the name was changed to the Autism (Collaboration, Accountability, Research, Education and Support) CARES Act. This Act is the primary source of federal funding for autism research, services, training and monitoring

Because of this important Act, the 2014 legislation dedicated over $3.1 billion for autism programming. President Trump renewing this Act in 2019 allowed for an extension of the current primary autism law and authorized $1.8 billion in spending on the developmental disorder over the next five years.

The Autism CARES Act of 2019 renews federal support for existing autism research and programs, but also expands these activities, placing an increased emphasis on reducing health disparities and improving services throughout the lifespan. More specifically, the funding provides:

  • Autism research grants awarded by NIH, focusing on advancing scientific understanding of autism, expanded efforts to develop treatments for medical conditions often associated with autism and address the needs of people affected by it. The NIH also works to foster collaboration among research centers to increase the effect of their efforts.
  • Ongoing support for programs across the country focused on ensuring high-quality services for people with autism. This includes funding 52 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs and 12 Developmental Behavioral Pediatric Training Programs. These programs allow for the continuation of education, early detection and intervention activities through the training of future leaders and healthcare professionals.
  • The continuation of Collaborative programs like Autism Intervention Research Network on Physical Health (AIR-P), which helps to translate research into improved care and tangible resources for families and clinicians.

The Act also calls for the Department of Health and Human Services to once again produce a report for Congress on the health and well-being of individuals with autism. In 2014, this important report to Congress emphasized the needs of individuals with autism as they transitioned out of school-based services and into adulthood. The 2019 Act has placed an increased emphasis on the needs of individuals with autism “across the lifespan,” highlighting a need to understand challenges faced by individuals of all ages. As noted by Autism Speaks President and CEO Angela Geiger, “this legislation ensures sustained funding to better support people with autism across the spectrum and at every stage of life.”

Indeed, as a neuropsychologist, working side-by-side with NESCA’s team of Transition Specialists, I have the privilege of following many individuals with autism spectrum disorders from early childhood throughout their transition to young adulthood.  I find that families begin to scramble as special education funding runs out and they struggle to understand how these young people will continue to get their needs met. For many years, the focus of funding and research was on children, but as these individuals aged out of school-based services, their needs did not end. Yet,  the funding was and continues to be well below what is necessary. While there have certainly been improvements, there continues to be many more needs than are able to be supported. Research remains essential in understanding the longitudinal needs throughout the lifespan, and I am encouraged that our country continues to support these efforts.

 

Reference:

Autism Speaks

About the Author:

Dr. Amity Kulis joined NESCA in 2012 after earning her doctoral degree in clinical psychology from the Massachusetts School of Professional Psychology, with a concentration in Children, Adolescents and Families (CAF). She completed post-doctoral training in pediatric neuropsychology with an emphasis on treating children with developmental, intellectual, learning and executive functioning challenges. She also has extensive training psychological (projective) testing and has conducted individual and group therapies for children of all ages. Before joining NESCA, Dr. Kulis worked in private practices, clinics, and schools, conducting comprehensive assessments on children ranging from toddlers through young adults. In addition, Dr. Kulis has had the opportunity to consult with various school systems, conducting observations of programs, and providing in-service trainings for staff. Dr. Kulis currently conducts neuropsychological and psychological (projective) assessments for school-aged children through young adulthood. She regularly participates in transition assessments (focusing on the needs of adolescents as they emerge into adulthood) and has a special interest in working with complex learners that may also struggle with emotional challenges and psychiatric conditions. In addition to administering comprehensive and data-driven evaluations, Dr. Kulis regularly conducts school-based observations and participates in school meetings to help share her findings and consultation with a student’s TEAM.

 

To book an evaluation with Dr. Kulis or one of our many other expert neuropsychologists and transition specialists, complete NESCA’s online intake form.

 

Neuropsychology & Education Services for Children & Adolescents (NESCA) is a pediatric neuropsychology practice and integrative treatment center with offices in Newton, Massachusetts, and Londonderry, New Hampshire, serving clients from preschool through young adulthood and their families. For more information, please email info@nesca-newton.com or call 617-658-9800.