Online Health Chat with Thomas Frazier, II, PhD & Beth Thompson
April 28, 2015
Autism Spectrum Disorder (ASD) is a group of complex disorders that affect brain development. ASD is typically associated with difficulties in social communication, social interaction, and restricted, repetitive patterns of behavior, interest or activities. Autism can also be associated with intellectual disabilities, delay or absence of language development, trouble with motor coordination and/or attention, and physical health issues.
In many cases, the symptoms of autism become less pronounced as a child gets older. Parents of children with autism should be flexible and ready to adjust treatment as needed for their child. Some people with autism go on to live typical lives, but often continue needing services and support as they age. Research in the field of ASD includes studies regarding early detection, prevention, causes, diagnosis and treatment.
About the Speakers
Thomas Frazier, II, PhD, is a pediatric psychologist and director of Cleveland Clinic Children’s Center for Autism. Dr. Frazier's specialty interests include the assessment and behavioral treatment of individuals with autism spectrum disorder. However, in his clinical practice, Dr. Frazier also specializes in the assessment and differentiation of pediatric bipolar disorder, ADHD and other disruptive behavior disorders. He received his undergraduate degree magna cum laude in psychology from John Carroll University in University Heights, Ohio, and completed both his Master’s and doctoral degrees in clinical psychology at Case Western Reserve University. His post-graduate training includes an internship in clinical neuropsychology at Ann Arbor VA Medical Center and one year of fellowship in clinical neuropsychology at Cleveland Clinic’s Department of Psychiatry and Psychology, Section of Neuropsychology.
Beth Thompson, MSSA, LSW, is the teen/adult services manager for Milestones Autism Resources and principal staff for The Roadmap to Adulthood Project. Ms. Thompson serves on the Regional Transition Advisory Committee for State Support Team 3, where she participates in county-wide event planning for transition-age students with disabilities. Ms. Thompson earned her undergraduate degree from Hiram College and attained her Master’s degree in social science administration from Case Western Reserve University, where she specialized in community development and social change. Ms. Thompson is certified as a Customized Employment Specialist and is a certified SELF Waiver Support Broker. Ms. Thompson also participates in the Employment First Transition Council for the State of Ohio.
Let’s Chat About Autism
Moderator: Welcome to our chat about Autism Transitions with Cleveland Clinic Center for Autism Director, Dr. Thomas Frazier, and Milestones Autism Resources’ Beth Thompson, MSSA, LSW. Dr. Frazier and Ms. Thompson, thank you for taking the time to be with us to share your expertise concerning autism.
Let’s get started with our questions.
All About Autism
sillycat: How can I tell if my child has autism? How is it diagnosed?
Beth_Thompson,_MSSA,_LSW: Milestones has a First Diagnosis toolkit that can be found on our website at www.milestones.org. Depending on the age of the child, diagnosis is done by different professionals. Please refer to our First Diagnosis toolkit for more information on seeking a diagnosis.
Thomas_Frazier,_II,_PhD: The resource Beth gave is great. I would just add that a multidisciplinary evaluation at an established autism and/or developmental disabilities clinic is best practice if a child is suspected of autism. We have these clinics at the Center for Autism at Cleveland Clinic. Our clinics use gold-standard measures, which have high sensitivity and are specific to autism spectrum disorder. Another option is the Rainbow Autism Clinic.
miracla: I hear a lot about the autism spectrum. Can you explain what this means?
Beth_Thompson,_MSSA,_LSW: Autism spectrum disorders (ASD) is a general term for a group of complex disorders of brain development. These disorders are characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors.
Grant: What is the difference between ASD (autism spectrum disorder) and Asperger’s? Or is Asperger’s considered part of the spectrum?
Beth_Thompson,_MSSA,_LSW: Asperger’s is no longer a different diagnosis. It falls under the umbrella of autism spectrum disorders.
ghyuiokl,: Do people with autism have empathy?
Beth_Thompson,_MSSA,_LSW: It depends. Some individuals with autism can have profound sympathy and empathy with and for others. Others may not, largely due to the characteristics of autism. It depends on the person’s experiences, abilities and self-awareness.
Thomas_Frazier,_II,_PhD: I would just add that there are two pieces to empathy: perspective-taking so that you know exactly what the other person’s experience is, and the feeling state that goes along with understanding. When people with autism are able to grasp the other person’s perspective (which is not all the time), then they almost always will feel empathy. When they can't get the perspective, then they will not feel or show empathy. But the real problem is not the capacity to feel empathy, it is difficulty with perceiving the other person's perspective. So, in short, just like neurotypical people, when people with autism understand what the other person is going through, they often feel empathy.
zbrown: What is the earliest age autism can be detected or diagnosed?
Thomas_Frazier,_II,_PhD: The evidence suggests that many individuals can be detected by 14 months with a careful evaluation, and the remainder can be detected by 2 to 2½ years. Rarely, a child is very high functioning with minimal symptoms, and these cases can require till age 3. We are working on objective markers that will assist and further reduce the age of identification.
percie: What progress has been made in terms of research in the area of ASD, and what do you hope to see in the future?
Thomas_Frazier,_II,_PhD: There has been tremendous progress in understanding the causes of ASD in the last 10 years, and the next 10 years will bring even more knowledge. We are getting closer to understanding the biological problems that led to autism in a subset of genetic syndromes associated with ASD. This information will be crucial to all people with autism, as the work shows that there are a small number of important mechanisms that lead to autism, including chromatin remodeling, which influences gene expression, and synaptic transmission abnormalities, which influence how the brain connects early in development.
love tractors: What leisure activities do persons with autism enjoy? Does this evolve when reaching adulthood in terms of activities they like?Beth_Thompson,_MSSA,_LSW: Milestones has a wonderful toolkit about teaching and fostering leisure skills in children and adults with autism, visit www.milestones.org
Millicent: What services or accommodations do autistic students often need or receive in schools?
Beth_Thompson,_MSSA,_LSW: Some accommodations would be a modified curriculum, extra time and a distraction-free environment for tests, and teacher notes. Some students are given aides; some students may receive assistance technology such as communication devices.
Thomas_Frazier,_II,_PhD: This is very individual and depends on the needs of the child. In addition to what Beth mentioned, a child with autism might need a functional behavioral assessment if they have challenging behaviors that interfere with learning and
may need numerous other possible accommodations and educational programming recommendations. The best practice is to get an independent evaluation and/or thorough educational team evaluation to figure out the child's needs and then collaborate with the team to identify the services and accommodations.
AutismNE: My son is developing skills in graphic arts and computer but we're not sure if he would be a candidate for college courses. He seems to only want to do computer and not study. He is 16 and in the special needs class where he is exempt from normal state testing. He is tested with the adapted special education at his individual grade level abilities, which are much lower than his grade level. He currently has a good IEP and the teachers are very good. He'll be attending a career vocational school next year, but the vocational part will be limited to basic daily living, which is very good and appreciated, but how can I guide him to more vocational-based training for computer and graphic arts?
Beth_Thompson,_MSSA,_LSW: Depending on where you live, there are specific camps and other vocational training programs for individuals with disabilities interested in this type of work. I would encourage you to explore options within your community. Some students will audit a community college class to see if they are able to handle the level of work. For some individuals, their interest in technology/computers may become a job and or may become a leisure activity. If your school has classes or your district can offer options, I would explore that, too.
palda_h: What can a school district do to improve the transition to adulthood for students on IEPs?
Thomas_Frazier,_II,_PhD: This is a very complicated question, but the basics are:
- Help the child to identify the type of work they enjoy and are capable of completing successfully.
- Help the child build as much independence as possible.
- Help the child learn as many social skills as possible, as these are crucial for work and, of course, life in general.
- Develop a specific transition plan that includes placement possibilities for work and job tryouts, ensuring adequate supports throughout the process.
Beth can hit anything else I forgot.
Beth_Thompson,_MSSA,_LSW: I agree with Dr. Frazier's answers. The school and IEP team can also work with their county board of developmental disabilities, Opportunities for Ohioans with Disabilities (OOD) and other agencies to better plan for post-graduation outcomes and services. The educational service centers/state support teams also provide trainings and support for school districts looking to improve transition plans and outcomes. I would also encourage the staff and the whole IEP team to take advantage of wonderful educational agencies/conferences such as OCALI and Milestones that have staff focusing on transition to adulthood with autism.
grey: How should we teach puberty in the home setting? What is appropriate sexual behavior to accept vs. inappropriate sexual behavior? Home vs. community?
Beth_Thompson,_MSSA,_LSW: If you live in Cuyahoga County, there is a fabulous resource with our County Board of Developmental Disabilities named Lydia Troha. She specializes in this topic and has a wealth of resources and a lending library. I would encourage you to speak with her.
Dawn: My child’s teacher has communicated that my child is struggling with certain skills (i.e., handwriting, riding a two-wheeled bike) that he has been working on for years. The teacher wants to remove these from the IEP. Is this the right thing to do?
Beth_Thompson,_MSSA,_LSW: Perhaps trying other equipment/techniques to overcome the barrier of coordination could be helpful. Instead of handwriting, try keyboarding. If you feel like the skills are important and can be mastered, you can always advocate keeping a goal in your child’s IEP. You could also ask for an evaluation from an occupational therapist for recommendations.
Shep: Our autistic grandson goes to school and gets dressed okay, but when he comes home, he has to be naked. Is this a common problem?
Beth_Thompson,_MSSA,_LSW: Based on anecdotal experience, this can be a common experience for families with children with ASD. Some children want to disrobe because of sensory issues, and some want the attention that is gained when they are naked unexpectedly. I would suggest that you speak with a behaviorist to identify the cause of the behavior so that you can decrease it.
LCHC: What is the best way to preserve academic/communications skills like reading, writing and typing for a person who is transitioning into the workforce? How do you maintain these skills for a person who might continue to have both academic and vocational needs after the IEP is gone?
Beth_Thompson,_MSSA,_LSW: It would depend on the needs of the individual, particularly what functional skills are needed for their adulthood life. If the individual is no longer attached to school services (IEP), there are options to consider to continue providing academic skill training in adulthood. Some families have personal tutors/aides/mentors that work with young adults on academic skills. Some young adults continue on for post-secondary education or for varied classes at their community college or vocational schools. You can also hire a private consultant to help you identify appropriate services for adulthood needs. Milestones provides such services, you can learn more at www.milestones.org.
PAWilds: I am an SLP in a state hospital for the mentally ill. I work with an Asian man with an ASD diagnosis who is able to slowly read and write one word at a time in English, with a very small amount of English verbalization. He is resistant to working on English sentences even while admitting that he needs this. Am I asking too much of an autistic adult very recently diagnosed who grew up in a refugee camp? Any words of wisdom from you will be welcomed, specific and general.
Thomas_Frazier,_II,_PhD: I would work on whatever is clearly functional in his current and immediate future environments. If it is functional for him to learn more English, then it is fine to work on that. However, you might also consider what else he could be working on and putting his efforts to that, including everyday living skills. This is a tough one, so know that your work matters and you are truly helping someone in need.
Help for Home
ladymae: Where do I begin to find the support in my home to target specific programming and behavior? What types of services should I seek?
Beth_Thompson,_MSSA,_LSW: Milestones believes in evidence-based approaches such as Applied Behavioral Analysis. These professionals are called BCBAs and many can provide behavioral therapeutic programming in your home, school or in the community that target significant behaviors.
Thomas_Frazier,_II,_PhD: In many cases, as Beth mentioned, you will want to identify a BCBA who can provide services that are indicated for your child. Determining what services are indicated requires a comprehensive evaluation. Cleveland Clinic Center for Autism (CCCA) has an outreach program that can help with developing and monitoring home programming, and there are other community providers that can assist with this as well.
choban: We don’t place any demand on our child at home due to the demands placed on them during school. Is this the right thing to do? How will this impact them long-term?
Beth_Thompson,_MSSA,_LSW: Consistency is helpful for all children with ASD. Repetitive, predictable schedules and tasks can help an individual with ASD make sense of their world and learn to better cope in their adult work and social life. While demands at school may be challenging for the child with autism, it is important to have a level of consistently from school to home on expectations of behaviors. This will better prepare the child for adult life, for both the vocational and social realms of their future life.
Thomas_Frazier,_II,_PhD: I couldn't agree more with Beth's answer. In some of our patients/students, we see situations where when demand is removed at home, the child is learning to engage in challenging behaviors in that setting, which are then difficult to extinguish. It is understandable that it is hard to do everything at home that is done at school, but having clear boundaries of behavior and knowing how to address challenging behavior at home is critical.
A2na: Why is it difficult for my child to complete tasks that cross midline? What are some activities or tasks I can have them complete to help practice crossing midline?
Beth_Thompson,_MSSA,_LSW: A pediatric occupational therapist would be the best professional to consult about this challenge.
Thomas_Frazier,_II,_PhD: I would just add that if the child has clear evidence of a neurological deficit, it can be useful to see a neurologist and/or neuropsychologist, particularly if there are other cognitive deficits suspected like attention problems or problems with motor function.
shadow12: How often should an individual with ASD see a genetic counselor? Should a non-ASD sibling see one as well? Also, is there a central site that one can access to keep up the current research and treatment options? Is it better for an individual to remain with their family as long as possible given the state of group home living and lack of training for caregivers? Ideally, how many skill sets and job tasks should an individual be exposed to during their school years to gain adequate preparation for the workplace setting as well as determining work preference?
Thomas_Frazier,_II,_PhD: The Simons Foundation web site is awesome for keeping up with current research: http://sfari.org. Individuals with ASD should see a genetic counselor if the medical professional they see suspects a genetic condition or if they were referred. Genetic testing in ASD is advancing rapidly, so it would be useful to check in with your primary care provider or a physician with whom you have an established relationship and ask them what seems appropriate.
The group home question is tough, but there are some good group home options; it is really just important to explore. Sometimes as parents, we forget to think about the advantages to our children of living in a supported or semi-independent setting, although I also share your concern about training for providers in these settings. At present, it is highly variable.
In terms of skill sets and jobs, I would say the more the better initially as you are figuring out the child's interests and skill level. But for many lower-functioning individuals, it is important to focus so that the individual can achieve mastery and independence. So narrowing over time can be important in these folks.
Athena: My adult son with Asperger’s lives out of state and is in the final stages of getting a PhD. He has been living independently since graduating from high school. One of his problems is poor personal hygiene. For example, he doesn't change his clothes for days, he sleeps in his clothes, he does not change his sheets, and he does not dress appropriately for the situation. Beside the health issue, this is a social issue because how can you get a job or make friends when you are wearing smelly clothes and do not show care for your hygiene? This is a problem that he has had since he was 14. I have tried everything. However, he does take care of his teeth. He won't comb or cut his hair. Thank you for reading this question. I think that if you respond, it will be something I have already heard/tried. Thank you very much!
Thomas_Frazier,_II,_PhD: You said it yourself, you have tried everything and now he is an adult. This is evidence that starting earlier (early childhood before adolescence when physical prompting is more feasible) tends to be more effective. Sometimes in situations like this, the individual has to have some lack of success before they recognize the need for help. I hope he comes to that conclusion.
Beth_Thompson,_MSSA,_LSW: This is a common issue for many teens and adults with ASD. Just as Dr. Frazier said, many of the young adults will not change this behavior until it impacts them negatively. While behaviorists have typically worked with children on the autism spectrum, there are some that specialize in adults and might be helpful to consult. Other young adults I have helped have changed their behaviors once they have typical peers/mentors that are highly motivating to be around that will help the individual understand the need for appropriate grooming/hygiene.
dimjcb: I've been paranoid about driving cars, and if I do decide to leave Ohio for say a new job outside of the state like the new Microsoft pilot program for autistic adults, what transit system should I consider riding?
Beth_Thompson,_MSSA,_LSW: If you reside in Northeast Ohio, there are two companies that have specific programs for individuals with ASD looking to learn how to drive. Heights Driving is one of them. Otherwise, the traditional transit system wherever you are going should be accessible.
dimjcb: I've been a sports guy since 2005, starting with a softball team in Willoughby. Are there some sport programs that people with autism can join, like intramurals?
Beth_Thompson,_MSSA,_LSW: There are many sports-related programs for individuals with ASD. Nationally, there are programs like the Special Olympics. Regionally, you can go to www.milestones.org, go to our Resource Bank, click what age you are and click on "recreational" opportunities to see a list of what's available in Ohio.
Ccfun: My autistic son lives very much in the present. He doesn't feel the need to work at tasks that he doesn't like now in order to get better in the future. For example, he doesn't want to practice greeting people because he doesn't need friends now (his words). This applies to all aspects of his life (academic, social and practical). How do I get him to realize what he does today will help him tomorrow?
Beth_Thompson,_MSSA,_LSW: Depending on his age and ability, I would recommend that he join some peer-integrated social or recreational programs. Also, seek a mentor with ASD or similar disability that can show him what the purpose is to learning all those non-desired activities like hand-shaking. Putting things in the "real-world" context can also help, too. That would include activities that are highly motivating to him and would require he complete tasks he has no interest in to access the "fun" activity."
Higher Education Help
dimjcb: Will I be able to get some help when I start college?
Thomas_Frazier,_II,_PhD: Beth can respond, too, but I would say there has never been a better time for someone to have ASD and go to college. Many colleges have supports and opportunities that did not exist previously. The key is to check with each college, be open about strengths and weaknesses, and critically evaluate what programs and supports they have to offer.
Beth_Thompson,_MSSA,_LSW: There are MANY colleges with specific ASD programs. Many of these programs have additional costs for the additional supports. There are also independent agencies that provide support regardless of the college you choose. You should research colleges for students with ASD and see the variety of programs. Once you have narrowed your choices, speak with their Disability Services Office about what they can offer. If a college does not have a specific ASD program, they will provide basic accommodations that are protected under the ADA, but not additional services that some students with ASD need like mentoring, social networking and executive functioning support.
AspieMom: Should a high school graduating teenager be encouraged to attend college full-time or part-time? If the child has never been away from home, are any programs available for transition? Are there certain colleges that are more "autism-friendly” than others? What type of research can I do and where should I begin?
- There are MANY colleges with specific ASD programs. You should begin researching for colleges with autism-specific support programs. There is typically an additional cost, but services may prove necessary to ensure success in college.
- Full-time vs. part-time really depends on the abilities and challenges for the young person. I would encourage you to speak with the Disability Services Office about what they would suggest at specific colleges you are interested in. This would be the first place to seek someone to speak with.
- There are transition programs that include a college component like College Internship Program and The Landmark Program and many others.
n122185p: Are there any employers willing to hire such children and provide on-the-job coaching to assist with transitioning into more successful job opportunities?
Beth_Thompson,_MSSA,_LSW: Yes, there are employers with a focus on hiring individuals with autism. Microsoft actually just began an initiative to recruit and hire adults with ASD. You can work with your state vocational rehabilitation agency (every state has one) to get job development and maintenance supports. Your county board of developmental disabilities can also help, too, with needs like long-term job coaching.
Carobo: Can people with autism learn meaningful job skills? What types of employment opportunities are available for individuals with autism?
Beth_Thompson,_MSSA,_LSW: Yes. Many individuals with ASD have remarkable talents and skills that can be used successful in the world of work. If an individual is more impacted by autism, they have options of sheltered or supported employment. If an individual is less affected, they can work in any field they choose.
Reen: What programs are out there to assist in finding possible work for young adults on the autism spectrum? Who can be contacted to get assistance? It seems as though a person is just out there and no one follows through with advice.
Beth_Thompson,_MSSA,_LSW: The two formal agencies in the US to work with when looking for employment and the supports needed are your local county board of developmental disabilities and your local vocational rehabilitation agency. While services are not always as quick or effective as families and individuals would like them, they are the primary agencies responsible for finding and maintaining employment for adults with disabilities. Many families have also found success using their own support networks (co-workers, neighbors and friends), who help find available jobs for their adult child with ASD.
200875s: How do I choose a future job/placement for my child? What should I look for?
Beth_Thompson,_MSSA,_LSW: It depends on your child’s age, preferences, interests and needs. One of the most famous advocates for individuals with autism, as well as an individual on the spectrum herself, Dr. Temple Grandin, is adamant that the best vocational matches for adults with ASD directly relate to their specific interests and abilities. You can seek assistance with job training, placement and retention services through your county board of developmental disabilities or the state vocational rehabilitation agency called Opportunities for Ohioans with Disabilities. Both of these agencies can help complete vocational assessments, trials and placements to find a good vocational match for your child. As your child ages, it is important to encourage strengths that are natural, while focusing behavioral and other therapies on functional living and communication skills that will help in any job setting they choose.
zbrown: What are common jobs that adults with autism can partake in?
Beth_Thompson,_MSSA,_LSW: Individuals with ASD can do a large variety of jobs. Temple Grandin has a great article online about what types of employment settings/roles might be good for different kinds of learners/workers. It truly depends on the skills, interests and challenges for the individual what might be the best job match.
Assessment and Planning
toddkotler: How would each of you define functional behavioral assessment? Is there more than one way to conduct one?
Thomas_Frazier,_II,_PhD: A functional behavioral assessment (FBA) has the goal of identifying the cause or causes of challenging behavior and using this information to develop a behavior intervention plan. There is more than one way to conduct an FBA, but there are clear best practices in the literature. For example, only doing indirect (questionnaire) assessments is clearly inadequate. Doing an experimental functional analysis (if ethical) is often important and is considered a best practice. Unfortunately, only a fraction of individuals are sufficiently trained and experienced to do these, even within the BCBA community.
AspieMom: If my teenager needs to be evaluated for independent living prior to college, who could I contact to perform the evaluation?
Beth_Thompson,_MSSA,_LSW: You can contact www.milestones.org for the universal Independent Living Skills Assessment tool to see what areas are lacking or mastered. You can also contact your local Independent Living Centers (many referred to as CILs) that help prepare individuals with disabilities to live independently as adults.
advocatemom: If parents are unhappy with their child's IEP transition plan, what professionals would they contact to do an independent evaluation?
Thomas_Frazier,_II,_PhD: Parents have a right to request an IEE independent evaluation.
jb6600: What types of support programs are available for young adults with Asperger’s? Our son is now 18 and has been through a wilderness program, therapeutic boarding schools and, most recently, left a program called Spectrum in Arizona. He has been in programs since 2011. He has a relentless sense that everyone is against him, that he is treated unfairly when he is required to follow rules and that people are bad when he doesn't get his way. He has violent meltdowns when he doesn't get his way, and we are now looking for an appropriate transition program. Any recommendations would be appreciated.
Thomas_Frazier,_II,_PhD: It is important to understand the driving factors behind all of the behaviors that might get in the way of his future success, including the driving factors for the meltdowns. It sounds like they are due to control and possibly escaping demands but, from your description, it is not clear whether all of the antecedents are known. My point being: get with a provider who can talk through all of this with you, observe him in multiple settings and identify a comprehensive treatment plan.
Beth_Thompson,_MSSA,_LSW: There are many transitional programs throughout the US to research. In Ohio, we have many "farm models" for adults with autism that need significant support for a limited time. I would also recommend working with your local county board of developmental disabilities or contacting a private autism consultant to investigate your options.
musicman: What supports/services are available to me after my child exits school services?
Beth_Thompson,_MSSA,_LSW: Long-term supports are available through the county board of developmental disabilities. This can include, but is not limited to, access to vocational settings, housing settings and supports, Medicaid waivers for the developmentally disabled population, recreational activities and other services. Our state agency, Opportunities for Ohioans with Disabilities, focuses on preparing, finding and maintaining competitive, community-based work opportunities for individuals with varying disabilities. Both agencies should be contacted and worked into the transition plan in high school, but can be contacted at any time in an individual’s life. These are largely the two agencies that will oversee and provide services to adults with disabilities. Medicaid and other governmental benefits are also available and many non-profits, such as Milestones, have targeted services for adults.
IndiansFan: When should I start working with the county board?
Beth_Thompson,_MSSA,_LSW: You can contact your county board of developmental disabilities at 2½ to 3 years of age. If you are working with an early intervention agency, they should help you connect. If your child is older than 3, you can still apply for services with your county board by calling their intake line.
AspieMom: I live in Summit County. Can I access the programs being discussed?
Beth_Thompson,_MSSA,_LSW: You can access OCALI, Milestones, your county board of developmental disabilities, your Opportunities for Ohioans with Disabilities office and many other programs. Summit County does have some great resources; you can visit www.milestones.org and type in Summit in our Resource Bank to find providers and programs close to you.
slhummer: What options are available for individuals who are considered severe on the spectrum, such as someone who is considered nonverbal?
Beth_Thompson,_MSSA,_LSW: What do you mean in terms of options? Housing, transition programs, employment?
Mhanna: Are there places I can refer parents where they can receive help filling out the forms for transition to adult services?
Beth_Thompson,_MSSA,_LSW: If you are in Ohio, Milestones offers these services, www.milestones.org. If you are not, I would work with your IEP team, specifically your transition or VOSE coordinator, to fill out these forms. They will also have many of the documents needed to access adult services.
CEVEC: Are you familiar with CEVEC? How do I enroll my child in that program?
Beth_Thompson,_MSSA,_LSW: Cuyahoga East Vocational Education Consortium (CEVEC) is a vocational and independent living skills program for students with disabilities. You can enroll your child if you are in one of the school districts that CEVEC serves. Contact your school IEP team/leader to learn if they are in the CEVEC consortium.
shadow12: If parents move out of state, are you basically starting at ground zero with services, waivers, etc.?
Beth_Thompson,_MSSA,_LSW: Waivers will follow an individual across county lines, but not state lines. The adult can reside out of state for a portion of the year, but their primary residence has to be the state where the waiver is administered. Unfortunately, if you move out of state you will most likely have to begin setting up with new providers and services.
How About Housing?
longern: Can people with autism live independently or should a group home be considered? I just do not know where to begin or how to make this decision. What criteria should I consider in making such a decision?
Beth_Thompson,_MSSA,_LSW: It depends on their “functioning” ability. Many individuals with autism can live independently, and some can live independently with supports from professionals or family, and some need a more supported living model like a group home. As your child begins to get older (14-22), there should be assessments on their independent living skills from the high school and other providers, if involved, and these should be able to help determine what your child can do and what they will have challenges with in a housing situation. There are many models to research, and I would encourage you to contact your county board of developmental disabilities or Milestones to investigate more. There will be parents speaking about their housing choices and innovative ideas at the Milestones conference.
wmkb: How do I find and get my child into a group home?
Beth_Thompson,_MSSA,_LSW: There are many models to research, and I would encourage you to contact your county board of developmental disabilities or Milestones to investigate more. You want to first speak with your staff/support administrator with your county board of developmental disabilities. Unless your family is financially stable enough to support your child in a home without assistance, you should ask your SA about Medicaid waivers available for people with developmental disabilities; waivers can help with the cost of housing and supports for adults with autism. There will be parents speaking about their housing choices and innovative ideas at the Milestones conference.
gail.mcpeake: What do you consider to be the critical elements of training for direct care staff who will be supporting young adults in group homes, shared apartments and other settings? These are non-degreed staff who may not be familiar with autism.
Thomas_Frazier,_II,_PhD: I think it is crucial that individuals who work in these settings get basic training and supervision in ABA. They need to learn how to prompt to independence and reinforce successive approximations (shaping). They need to learn how to manage challenging behaviors by identifying the function of the behavior. Our outreach program often trains staff in these situations, and there are other programs and BCBAs in the area that can provide this training and oversight. The most successful programs I have seen in this area use behavior therapy knowledge in their staff training and evaluation.
Beth_Thompson,_MSSA,_LSW: OCALI (The Ohio Center for Autism and Low Incidence) has worked with the Autistic Global Initiative to create a manual for direct care staff. This manual was largely written by self-advocates, parents and other direct providers. There are also wonderful webinars on OCALI that can help educate direct care staff. Visit www.OCALI.org or call Milestones, who also provides customized training for direct care staff.
Mhanna: Does a family’s income affect their adult child with autism’s ability to receive an IO waiver? Are there other waivers available?
Thomas_Frazier,_II,_PhD: Income plays a role in the process, but most waivers are need-based ultimately and so talking with your county board is crucial. You need to let them know what is happening and what your needs are. Unfortunately, the county boards have limited resources as well and so getting a waiver can be a long and not always successful process, but it is something that many parents need to try. In the meantime, there are some supports the county can give, and with insurance coverage for ASD rolling out, there will begin to be more options for insurance-based supports to help families affected by autism and challenging behavior.
n122185p: What is the IO waiver?
Beth_Thompson,_MSSA,_LSW: The IO waiver is the Independent Options Waiver. It is a Medicaid waiver that is administered through your county board of developmental disabilities and provides an individual with money for support services in adulthood such as employment, transportation, housing, etc. You have to apply with your county board of developmental disabilities. There is often a long waiting list, so the quicker you ask to be placed on it, the better off you will be. There are also two other waivers, called the Level 1 and SELF waivers.
advocatemom: Our insurance has covered behavioral therapy (ABA specifically) for years, yet we have had to pay out of pocket for everything. The issue is finding a provider that will bill the insurance in Ohio. Schools don't want to provide appropriate services either, so on top of therapy you have to pay advocate and/or legal fees to boot. Why is this so difficult when it's obviously happening in other states? Also, is there any progress being made in Ohio for providers to bill insurance, specifically for home-based therapies?
Thomas_Frazier,_II,_PhD: Unfortunately, this problem is not unique to Ohio. There are states with better coverage and fewer problems but there are also others with worse coverage and more problems. Just the fact that Ohio has the autism scholarship puts us ahead of most states. However, your concern is real. At the Cleveland Clinic Center for Autism, we are working on this by starting outpatient programs over the next one to two years that bill insurance and provide non-intensive ABA services. It has been a difficult process, but we are making progress. There is also an attempt to increase the autism scholarship underway so please support those efforts.
Athena: There seems to be so many resources available for children with ASD and their parents. There seems to be none for adults and their parents. What can I do, personally, to make that change? As a parent, I feel the need for some type of support. Thank you.
Thomas_Frazier,_II,_PhD: This is very true and unfortunate. Milestones has lists of providers who are more adult focused, so I would encourage you to visit their website. To make this change, we need to train more providers specifically interested in autism. This will happen organically over time as the population of children who were identified in the 90s and 2000s age, but it will take time.
dimjcb: After college, will I need some tools to continue on into adulthood?
Beth_Thompson,_MSSA,_LSW: That really depends on your abilities and challenges. Many adults with ASD need some level of support, whether from a counselor or another professional to help with social skills or executive functioning skills. It would truly depend on your individual needs.
shadow12: What level of support does the Cleveland Clinic Center for Autism provide to its students after transitioning out of the program into adulthood? What should parents look for when evaluating potential job sites and programs for their children?
Thomas_Frazier,_II,_PhD: For our Lerner School program, we have been gradually increasing the amount of supports we can provide. At present, we begin the transition process very early by having families review a transition checklist (starting at age 6) at every IEP meeting. We then have key discussions based on data acquired, child's skills, parent desires, etc. that occur at the age 14 and 16 IEP meetings. In later adolescence, in addition to vocational skills training, we have a specific roadmap to transition that we are implementing that includes educating parents on all of the steps and paperwork they need to complete, helping them identify potential job sites, having parents visit and evaluate sites, make decisions about job tryouts, provide a support plan for job tryouts and wean supports as the individual demonstrates success. We are learning every day about how to improve this process and how to help parents get "unstuck” – a common phenomenon – in the actions they need to take to help their adult children transition.
Mhanna: How do professionals best prepare parents of students with autism and emotional disturbances to prepare for their future? For example, the soft skills are as, if not more, important than the actual job skills?
Thomas_Frazier,_II,_PhD: It is often important for parents of high-functioning children to learn the language of social thinking and how to prompt and reinforce their child using social thinking skills. For children ages 6 to 12 in our SPIES program, we have a parent training component. For older children/adolescents, there are resources online including resources by Michelle Garcia Winner that are very useful for parents and the individuals themselves to read and begin practicing. Identifying a pediatric psychologist who can assist you in understanding what skills to prompt and reinforce can also be helpful.
The emotional disturbance piece may require evaluation to understand if it is biologically or behaviorally driven or some combination. Treatment recommendations will follow a more detailed understanding of the emotional disturbance.
toddkotler: How detailed should a transition plan be? I encountered one recently that only had three items for a high school senior, each stated "Student will be provided information on . . ." and that was it. No stated method of delivery and no measurable goal.
Thomas_Frazier,_II,_PhD: That is woefully inadequate. A transition plan should be very detailed and include specific information about which skills the child has achieved or will be taught, the vocational opportunities for them, the supports needed to achieve the goals of the plan, etc.
Viola: My grandchild has been diagnosed with pervasive developmental disorder, not otherwise specified. What does that mean? What should we expect as he grows up?
Beth_Thompson,_MSSA,_LSW: A pervasive developmental disorder not otherwise specified (PDD-NOS) is one of the three autism spectrum disorders (ASD) and also one of the five disorders classified as a pervasive developmental disorder (PDD). It is difficult to say what will happen with your grandchild growing up. Individuals with autism can do a variety of amazing things and also face understated challenges. What we do know is that early intervention works for children and should be focused on as the child develops. The more evidence-based intervention services the child gets, the better off the child will be.
Char: What is the meaning of neurotypical?
Beth_Thompson,_MSSA,_LSW: It’s an abbreviation of neurologically typical, a neologism originating in the autistic community as a label for people who are not on the autism spectrum. Everyone that does not have autism, or a similar disorder, is considered neurotypical.
AspieMom: Will I be able to get a transcript of this very educational and helpfully informative chat at the completion?
Moderator: Absolutely. If you want a copy immediately, I suggest that you copy/paste it into a word document. I will be sending the transcript draft to an editor to group the questions together and categorize. We give it about a two-week turnaround grace period, and then it is posted online. You will receive an email with a link to the posted transcript.
I will say that the editor is pretty fast and we often beat the two week turnaround goal. When it is posted, the direct link will be: http://my.clevelandclinic.org/health/transcripts/1748_transitioning-with-autism-from-diagnosis-to-adulthood.
That is all the time we have for questions today. Thank you, Thomas Frazier, II, PhD and Beth Thompson, MSSA, LSW, for taking time to educate us about the transitions of autism.
On behalf of Cleveland Clinic Children’s, we want to thank you for attending our online health chat. We hope you found it to be helpful and informative.
If you would like to learn more about the benefits of choosing Cleveland Clinic Children’s for autistic spectrum disorder conditions, visit us online at http://clevelandclinicchildrens.org/autism/.
Thomas_Frazier,_II,_PhD: Goodbye to all participants. Thanks to everyone for participating. If I missed your question or did not provide a complete answer, I apologize. Hopefully by reading through the chat you can find answers or at least next steps.
Have a great week! Tom
Beth_Thompson,_MSSA,_LSW: The transition to adulthood for individuals with ASD can be confusing and overwhelming, but there are more and more people to help you every day. I'll never say that transition planning is not hard, but I will always say it's worth it. Plan early, meet regularly, form a team and believe in the abilities and strengths of your child/young adult.
To schedule an evaluation for your child or to learn more about the services provided by Cleveland Clinic Children’s Center for Autism please call 216.448.6440 or visit us at http://clevelandclinicchildrens.org/autism.
For More Information
Cleveland Clinic Children’s was nationally ranked in pediatric care by U.S. News & World Report’s 2014-2015 edition of America’s Best Children’s Hospitals.
Cleveland Clinic Children’s Center for Autism is involved in research to identify causes and advance treatments for autism spectrum disorders. Our state-of-the-art autism facility is dedicated to treatment, education and research for children, adolescents, young adults and families dealing with autism spectrum disorders. It is uniquely integrated within the health care system and housed in the Debra Ann November Wing at Cleveland Clinic Children's Hospital for Rehabilitation campus.
Milestones Autism Resources helps individuals with autism reach their unique potential. We focus on educating and coaching for family members and professionals in evidence-based practical strategies. Our conferences, workshops, professional development, referral calls and online resources connect the autism community with vital information and each other.
Founded in 2003 by parents seeking to improve programming available for their children with autism, Milestones exists to serve, support and enrich the local autism community. Then and now, we are the preeminent autism resource in Northeast Ohio for information about an individual’s social, emotional, educational, recreational, therapeutic, vocational and housing needs from birth through adulthood. Milestones is the first call for help at each transition of an individual’s life.
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Learn more about symptoms, causes, diagnostic tests and treatments for autism spectrum disorder.
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For additional information about autism research programs at Cleveland Clinic, please visit clevelandclinicchildrens.org/autismresearch.
To sign up for a research program: Autism Research Signup.
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