The FAM committee hosted a Lunch & Learn on Oct. 23, 2019 focused on autism resources. The panel, moderated by FAM committee chair Kristin Donner and parent and DreamWorks animator Megan Kreiner, included:
Carrie N. Dilley, PhD, Licensed Clinical Psychologist
Juan Corral, MS, BCBA, Board Certified Behavior Analyst & Educator
Kristin Kucia, MA, Manager of Student Affairs, Exceptional Minds
Marjan Kermani, Esq., Assistant Director & Supervising Attorney, Lanterman Special Education Legal Clinic
Sandra Equihua, Parent & Designer, Mexopolis
What does the diagnosis process look like?
Autism is a social communication disorder that is impactful in a variety of ways, including significant challenges in social communication, and restrictive and repetitive behaviors. It’s a good idea to start with a comprehensive evaluation—a diagnosis can’t be made in a quick assessment, you need a thorough picture. One of the key phrases you’ll hear from experts is Theory of Mind – the way an individual thinks and understands about others outside themselves. Those on the spectrum often default that people around them think and feel as they do. No two individuals will be at the same level—some are brilliant, gifted and talented individuals while others might really be struggling. Often you’ll hear the words – high functioning and low functioning – but those are not diagnostic terms, they are assigned to give an idea to others where an individual is functioning on the spectrum. Instead, an autism spectrum disorder diagnosis is often assigned one of the following three levels:
Level 1 – Requiring Support – difficulty with social interactions, organization and planning problems
Level 2 – Requiring Substantial Support – frequent restrictive and repetitive behaviors, limited social interactions
Level 3 – Requiring Very Substantial Support – severe deficits in communication skills
Experts, such as Dr. Dilley, are quick to point out that diagnosis is fluid, those on the autism spectrum can move between levels.
How can you make sure to receive the resources you need, especially if your insurance company doesn’t cover them?
If a child is diagnosed under the age of three, the Regional Center is required by the State of California to provide free services. After the age of three, academic services can be provided through the school while other services might be received through the Regional Center, private facilities or managed care. The Individuals with Disabilities Education Act (IDEA) is a comprehensive act and governs the Individualized Education Program (IEP) document and includes section 504. It creates a lot of protections and services. Every child must receive Free Appropriate Public Education (FAPE) in the Least Restrictive Environment (LRE), i.e. educated with non-disabled children to the extent it’s possible. Section 504 provides reasonable accommodations – it won’t give support services but offers accommodations. Assessments need to be thorough and start in one of two ways: 1) The school initiates the assessment; 2) A written referral from the parent initiates it. The School District must respond with an assessment plan within 15 days of receipt of the letter and a qualified, licensed individual must do the assessments. Everything builds off these assessments. The family can get a written report of the assessment before the IEP eligibility determination meeting. Assessments must be done every three years, but if you feel your child isn’t progressing you can request another assessment. You can also request an independent assessment if you don’t agree with the school’s initial report. Bring an advocate, support system, and/or attorney to the IEP determination meeting. It goes a long way, and changes the balance. Also, you don’t have to sign the IEP at the meeting if you don’t agree with it. Section 504 also applies to individuals who turn 18 so you can request accommodations from employers.
What are some of the unique challenges people on the autism spectrum face when seeking employment?
Oftentimes, those on the autism spectrum are concrete thinkers and they may not understand indirect suggestions. It’s important for them to receive feedback from industry professionals – what to do, what not to do. If one of their behaviors is bothersome, they need direct feedback to stop. They might need a quiet space because of sensory overload or require more breaks. Experts, such as Kristin Kucia, highly recommend social skills training for those on the spectrum.
Should you get an assessment as an adult if you think you might be on the spectrum?
It really depends on your reasons behind being assessed. Oftentimes, people who are in relationships, struggling at work or perhaps see similarities in their own childhood behaviors and that of their ASD child, might want to probe further to gain more knowledge. Those who need a diagnosis for disability will require a comprehensive assessment.
Contact information for the panelists:
Juan Corral, MS, BCBA
Board Certified Behavior Analyst & Educator
Marjan Kermani, Esq.
Assistant Director & Supervising Attorney, Lanterman Special Education Legal Clinic
3303 Wilshire Boulevard, Ste. 700, Los Angeles, CA 90010