Missionary Renegade: "Support for newly diagnosed families" Autism Speaks in New York, New York, United States

Thursday, January 11, 2018

"Support for newly diagnosed families" Autism Speaks in New York, New York, United States

"Support for newly diagnosed families" Autism Speaks in New York, New York, United States

E-Speaks eNewsletter

The time following a diagnosis of autism can be overwhelming. You likely will experience a range of emotions and have questions about what lies ahead. However you feel, know that thousands of people with autism and their loved ones share this journey. Autism Speaks is here to help.
New diagnosis resources

Photo courtesy Mom2Mom
Now that you have the diagnosis, the question is, where do you go from here? Autism Speaks has created age-specific tools and resources, from early childhood through adulthood, to help you find the right supports and services. Read More
Parents seek help discussing autism with newly diagnosed 9-year-old

We help answer a common question from parents: "Our 9-year-old son was recently diagnosed with autism. He knows something's up, but we're not sure how to explain. Advice?" Read More
Newly diagnosed adult with autism seeks therapy advice

In response to a 47-year-old man who was recently diagnosed with autism, an Autism Speaks-funded researcher who studies the factors that help or challenge adults who have autism offers suggestions and perspective.

Newly diagnosed adult with autism seeks therapy advice
“I’m a newly diagnosed 47-year-old with autism. What kind of treatments can help me?”

Today’s “Got Questions?” answer is from psychologist Megan Farley of the Waisman Center for developmental disabilities at the University of Wisconsin, Madison. Dr. Farley received an Autism Speaks research grant to study the factors that help or hinder the development and success of adults with autism.
This is both a great question and a difficult one to answer. Currently we have far too little in the way of evidence-based treatments for adults with autism spectrum disorder (ASD).
We have a small handful of treatment strategies that have been clinically evaluated and found to be effective for helping adolescents and young adults with autism. At the University of Texas, for example, researchers have successfully used a virtual reality training program to improve social skills among young adults with autism. (Read more about it here.) The PEERS program has likewise shown promise for teaching social skills to young adults with autism. (Learn more about PEERS here.)
Finding adult autism programs in your community
While we have few scientifically tested therapy and support programs for adults with autism, many clinicians, parents, community providers and adults with ASD are developing such programs in their communities. One place to look for therapy and support programs is in the Autism Speaks Resource Library for Adults. Another way to search for these programs is through the state-by-state Autism Speaks Resource Guide. (Click the resource-guide link, select your state, and look for the adult resources at the top of the page.) And you can download Is It Autism and If So, What Next? A Guide for Adults, which was designed to help adults who suspect they may have autism, as well as those recently diagnosed with the disorder. This kit will provide an overview of autism to help you better understand the disorder and will hopefully clarify whether you should seek out a professional for a thorough evaluation.
For live help with these resources, you can call or email the Autism Speaks Autism Response Team and ask for its adult-services specialist: 888-288-4762 (en Español 888-772-9050) or familyservices@autismspeaks.org.
General guidelines for finding the help you need
Beyond autism-specific programs and therapies, I can offer you some general recommendations based on my clinical experience, that of my colleagues and that of the many adults with autism with whom I’ve had the privilege to work.
First, it’s important to consider what type of help you need. Every individual with autism is unique in terms of his or her challenges and strengths.
Typically adults with autism come to a mental health clinic because they’re struggling with one or more issues. Common autism-related challenges include social isolation, finding and keeping a job or a romantic partner, anxiety or mood problems or an inability to organize one’s life.
For mood or anxiety problems, I recommend seeing a psychiatrist for a medical consultation and a psychologist or social worker for individual therapy or group counseling. Ideally you want someone experienced in helping adults who have autism. So ask for such expertise when you contact a therapist or mental health clinic.
Beyond autism-specific therapy
Unfortunately, not every community has adult autism specialists. If yours does not, I recommend finding a counselor who seems sincerely interested in learning more about autism in general and your experience in particular.
In addition, it’s important to understand that both psychologists and social workers can vary widely in the approach they use in counseling. In my experience, most individuals with autism do best with therapy that takes a concrete, skill-building approach. Cognitive behavioral therapy is a good example of this type of therapy. (More about cognitive behavioral therapy for autism here and here.)
I also suggest that you consider bringing along someone who knows and cares about you for at least part of the therapy session. In my experience, many adults with autism have difficulty explaining their challenges. Someone who knows you well may be able to help you and the therapist zero in on the behaviors that are creating problems and develop strategies to address them.
You might also want to consider group therapy or classes for those who have difficulty with social interactions. Learning social skills in a group can be particularly helpful because participants can share observations and suggestions. Your therapist or social worker may be able to recommend such a group in your community.
If you’re seeking help finding and keeping a job, you can find additional help through your state’s vocational rehabilitation agency. These agencies have the mission of helping adults with disabilities – including autism – prepare for and find appropriate employment. Also, the Autism Speaks Employment Tool Kit was designed to help you research, find and keep employment. (Download it free here.)
Finally, I recommend you look to the community of adults with autism. There are several good websites that provide information and forums for adults with ASD. One such site is WrongPlanet. Another is the Global & Regional Asperger Syndrome Partnership (GRASP).

Thanks for your question. I hope these tips prove helpful to you and other readers. You can download Is It Autism and If So, What Next? A Guide for Adults here. Please let us know how you’re doing by emailing us at GotQuestions@autismspeaks.org.

Got more questions? Send them to GotQuestions@autismspeaks.org. Subscribe to Autism Speaks Science Digest to get “Got Questions?” blogs and all our research news and perspective delivered to your inbox.
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The Autism Speaks blog features opinions from people throughout the autism community. Each blog represents the point of view of the author and does not necessarily reflect Autism Speaks' beliefs or point of view.
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Insurance Resources

Navigating the complexities of health insurance can be challenging, especially when trying to determine your coverage for autism. Our Early Periodic Screening Diagnostic and Treatment Toolkit and Self-Funded Employer Toolkit help guide you through this process.
Insurance Resources
Navigating the complexities of health insurance can be challenging, especially when trying to determine coverage for autism. The following tools and resources will aid you through the process.
Early Periodic Screening Diagnostic and Treatment Toolkit
Under a program called Early Periodic Screening Diagnostic and Treatment (EPSDT), any Medicaid-eligible child under age 21 is entitled to all health care services that are found to be medically necessary to treat conditions discovered in the child. States are required to provide all such services that are coverable under the Federal Medicaid program regardless of whether the service is covered in a state's Medicaid plan. The EPSDT Toolkit was assembled to help families who are working to secure Medicaid payment for Applied Behavior Analysis (ABA) services. It is our hope that these materials make the process smoother for your family.

Self-Fu

Employer Tool Kit (ERISA) and Federal Employee Health Benefit Plans
Self-funded insurance plans are one of the most widely used forms of insurance coverage offered by employers. Because such plans are covered under federal law, they are exempt from state autism insurance laws. Autism Speaks has created this tool kit to help families find the coverage they need.
During the recently concluded open season, federal employees and retirees were able to select a 2017 Federal Employees Health Benefits (FEHB) Program health insurance plan that covers applied behavior analysis (ABA) for autism. All the FEHB plans cover ABA but require prior approval for ABA services. Age restrictions vary, and some plans cap the amount of services or specify who can provide them. For more information on specific plans, please email us at familyservices@autismspeaks.org or advocacy@autismspeaks.org. Our analysis is intended only as a guide; FEHB participants should carefully review plan offerings. Full plan information is available here.
FAQs: State Autism Insurance Reform Laws
46 states have required autism insurance coverage by law. Find out what your state requires.

Autism Speaks Insurance Link
Want to find out if you are entitled to autism benefits under your current health insurance plan? Visit our web-based interactive tool kit to find answers. Log in here.

Health Insurance Marketplaces and Autism

Autism Speaks has produced resources to help families better understand how the Affordable Care Act ("Obamacare") impacts their insurance coverage. The resources include fact sheets, basic information about the law and helpful links. Learn more here.
Questions? Call us at 888-288-4762 or en Español 888-772-9050, or email familyservices@autismspeaks.org or advocacy@autismspeaks.org.
To get involved in autism insurance reform, be sure to follow @AutismVotes on Facebook and Twitter and sign up to recieve updates on our efforts here.

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How is autism treated?

Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs. Autism Speaks can help you learn more about behavioral and medical autism interventions.
How Is Autism Treated?
Each child or adult with autism is unique and, so, each autism intervention plan should be tailored to address specific needs.
Intervention can involve behavioral treatments, medicines or both. Many persons with autism have additional medical conditions such as sleep disturbance, seizures and gastrointestinal (GI) distress. Addressing these conditions can improve attention, learning and related behaviors. (Learn more about Treatment of Autism’s Core Symptoms and Treatment of Associated Medical Conditions.)
Early intensive behavioral intervention involves a child's entire family, working closely with a team of professionals. In some early intervention programs, therapists come into the home to deliver services. This can include parent training with the parent leading therapy sessions under the supervision of the therapist. Other programs deliver therapy in a specialized center, classroom or preschool. (Learn more about Early Intervention.)

Typically, different interventions and supports become appropriate as a child develops and acquires social and learning skills. As children with autism enter school, for example, they may benefit from targeted social skills training and specialized approaches to teaching.
Adolescents with autism can benefit from transition services that promote a successful maturation into independence and employment opportunities of adulthood. (Learn more about Transition in our Transition Tool Kit.)
What Early Intervention Therapies Are Currently Available?
Objective scientific studies have confirmed the benefits of two methods of comprehensive behavioral early intervention. They are the Lovaas Model based on Applied Behavior Analysis(ABA) and the Early Start Denver Model. Parents and therapists also report success with other commonly used behavioral therapies, including Floortime, Pivotal Response Therapy and Verbal Behavior Therapy. For still more information, also see the “Treatment and Therapies” chapter of our 100 Day Kit.
Treatment Options for Toddlers and Preschool Children
Scientific studies have demonstrated that early intensive behavioral intervention improves learning, communication and social skills in young children with autism. While the outcomes of early intervention vary, all children benefit. Researchers have developed a number of effective early intervention models. They vary in details, but all good early intervention programs share certain features. They include:
√ The child receives structured, therapeutic activities for at least 25 hours per week.
√ Highly trained therapists and/or teachers deliver the intervention. Well-trained paraprofessionals may assist with the intervention under the supervision of an experienced professional with expertise in autism therapy.
√ The therapy is guided by specific and well-defined learning objectives, and the child’s progress in meeting these objectives is regularly evaluated and recorded.
√ The intervention focuses on the core areas affected by autism. These include social skills, language and communication, imitation, play skills, daily living and motor skills.
√ The program provides the child with opportunities to interact with typically developing peers.
√ The program actively engages parents in the intervention, both in decision making and the delivery of treatment.
√ The therapists make clear their respect for the unique needs, values and perspectives of the child and his or her family.
√ The program involves a multidisciplinary team that includes, as needed, a physician, speech-language pathologist and occupational therapist.
Do Children or Adults Diagnosed with Autism Ever Move Off "the Spectrum"?

Growing evidence suggests that a small minority of persons with autism progress to the point where they no longer meet the criteria for a diagnosis of autism spectrum disorder (ASD). Various theories exist as to why this happens. They include the possibility of an initial misdiagnosis, the possibility that some children mature out of certain forms of autism and the possibility that successful treatment can, in some instances, produce outcomes that no longer meet the criteria for an autism diagnosis.
You may also hear about children diagnosed with autism who reach “best outcome” status. This means they have scored within normal ranges on tests for IQ, language, adaptive functioning, school placement and personality, but still have mild symptoms on some personality and diagnostic tests.
Some children who no longer meet the criteria for a diagnosis of autism spectrum disorder are later diagnosed with attention deficit and hyperactivity disorder (ADHD), anxiety disorder or a relatively high-functioning form of autism such as Asperger Syndrome.
Currently, we don’t know what percentage of persons with autism will progress to the point where they “lose their diagnosis.” We likewise need further research to determine what genetic, physiological or developmental factors might predict who will achieve such outcomes.
We do know that significant improvement in autism symptoms is most often reported in connection with intensive early intervention—though at present, we cannot predict which children will have such responses to therapy.
We also know that many people with autism go on to live independent and fulfilling lives, and that all deserve the opportunity to work productively, develop meaningful and fulfilling relationships and enjoy life. With better interventions and supports available, those affected by autism are having better outcomes in all spheres of life.
For more information and resources, please see our Video Glossary and FAQs and special sections on Symptoms, Diagnosis, Learn the Signs, Your Child’s Rights, Asperger Syndrome and PDD-NOS. We also offer a number of resource-packed tool kits for free download from our Family Services Tool Kits page and our Autism Treatment Network Tools You Can Use page). Our 100 Day Kit is for families who have a child recently diagnosed with autism. These resources are made possible through the generous support of our families, volunteers and other donors, as well as through grants administered by the National Institutes of Health.

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Join our evening tele-learning program on January 24

Join us for a tele-learning program for families with a newly diagnosed child and learn the next steps to take. This is part of a series of bi-monthly virtual presentations from Autism Speaks.
Autism Speaks Tele-Learning Programs
Autism Speaks Tele-Learning Programs are virtual presentations for families, meant to provide information about Autism Speaks and the free resources available to individuals with autism and their families. These free programs will be held bi-monthly with two rotating topics – navigating an autism diagnosis and preparing for the transition to adulthood. Looking for more information about the tele-learning programs? Email us at outreach@autismspeaks.org!
Newly Diagnosed Child
Has your child been recently diagnosed with autism? Join us for a tele-learning program for families with a newly diagnosed child and learn about the best steps to take after receiving an autism diagnosis.
See a recap of the first recording in February here!
The tele-learning program will highlight:
information about Autism Speaks
how to access free resources
tools to help you and your family
January Tele-Learning Program: Newly Diagnosed
Wednesday, January 24, 2018
7:00 p.m. – 8:00 p.m. EST
RSVP by January 23rd
Transition
Do you want to learn more about helping to prepare your child for the transition process and how to best support him/her from middle school through the transition into adulthood? Join us for a tele-learning program for families with transition-aged children (ages 12-22) and learn about the best ways to support your transition-aged youth. It's never too early to start planning.
See a recap of the first recording in March here!
The tele-learning program will highlight:
information about Autism Speaks
how to access free resources
tools to help you and your family
January Tele-Learning Program: Transition
Wednesday, January 10, 2018
7:00 p.m. – 8:00 p.m. EST
RSVP by January 9th
Tele-Learning Program Recaps
February 27, 2017 Tele-Learning Recording
2017-02-27 19.01 February Autism Speaks Tele-Learning Newly Diagnosed Child from Autism Speaks on Vimeo.