Aascend, the Autism, Asperger's Syndrome Network Coalition for Education, Networking and Development, is sponsoring their Success on the Spectrum Conference in San Francisco on October 15, 2011. This event is aimed at adults on the autism spectrum, and will feature discussions about relationships, employment options and transitioning issues.
The keynote speaker is Ari Ne'eman, president and co-founder of ASAN, the Autistic Self Advocacy Network, as well as a member of President Obama's Council on Disability. There will also be a preview of the film Too Sane For This World, featuring adults on the spectrum. For information on the conference, please visit the Aascend website. Loving Lampposts is a thoughtful and intelligent documentary by Todd Drezner about autism, neurodiversity, society’s viewpoint of the diagnosis and how that impacts the way we treat autistic individuals, both medically and personally. I was excited to see that this balanced and open minded film is available on Netflix instant watch. Drezner’s son Sam, was diagnosed with PDD-NOS as a toddler. He seems to be an easy-going child, although quirky and not very social. (I won’t say “high functioning”, because the film offers a thought provoking conversation on that term.) The film’s title comes from Sam’s early special interest in and connection to a group of lampposts near his home. Visiting the lampposts is an important ritual for Sam as a child. But the film is much more than a look at one family’s experience with their special needs child. Drenzer thoughtfully examines the big questions about whether autism is an illness to be cured or a difference to be accepted. In his interview with Steve Silberman of the blog Neurotribes, Drenzer discusses how he views autism as a difference as well as a disability. I appreciate this realistic and still respectful stance. In the documentary, Drenzer manages to interview many of the big names in autism science, such as Simon Baron-Cohen, and Paul Offit. He talks to parents of autistic children, like AutismVox blogger Christina Chew, and author Roy Grinker, and autism Playboy Bunny Jenny McCarthy. The most exciting group in the film is the widely diverse group of autistic adults represented. So often the focus of research, treatment and policy is on children, leaving autistic adults as the forgotten majority. Drenzer talks to artist Dora Raymaker of AASPIRE, Sharisa Joy Kochmeister of AutCom, author Stephen Shore, as well as others. The film celebrate the gifts these individuals bring, while not ignoring their difficulties. Loving Lampposts is entertaining and informative, well worth watching. I recently reviewed The Anti-Romantic Child, by Priscilla Gilman. She will be speaking in the Bay Area this week. Please check with the venue to ensure that the details haven’t changed. Tonight, Thursday July 21, 2011 at 7 pm, Gilman will be speaking at Kepler's in Menlo Park. On Wednesday, July 27, 6 pm Gilman will be speaking at Book Passage, 1 Ferry Building in San Francisco. Finally, on Thursday, July 28, 2011, 7:00pm, she’ll be at Books Inc in San Francisco, CA . The Anti-Romantic Child is a fascinating and well written book, and I expect that Gilman will be an equally interesting speaker. There are a lot of books written by mothers about raising their special needs children, some excellent, some not so great, most somewhere in the middle. The Anti-Romantic Child, A Story of Unexpected Joy , by Priscilla Gilman is both beautifully written, inspiring and dramatic, and also a bit different than the other books in this genre. That’s due to the author, who is not only a mother, but also a former professor of English literature. Gilman weaves together her interest in Wordworth’s poetry with her experiences in raising her special needs son in a way that brings deeper meaning to both. The Anti-Romantic Child is about Gilman’s son Benj, a boy exhibiting hyperlexia, as well as autistic characteristics, such as rigid behaviors and deficits in social skills. Hyperlexia is characterized by interest in words and exceptional reading skills along with difficulty with reading comprehension. Hyperlexic individuals frequently have social problems and other developmental delays. Gilman carefully discusses the unusual issues her son has, such as sensory sensitivities, and a tendency toward OCD and rigid behavior, without ever putting him into a labelled box. What makes Gilman’s book so fascinating is how she uses the abstract and ambiguous natures of poetry to further her own understanding of her son’s development. Because Gilman was a literature professor, she has a skill in presenting the poetry in a way that enhances the understanding of both the developmental issues and the poetry. Since I was trained as an engineer, with MIT’s minimal literature requirements, I’ve rarely had that experience. Like all the mother/authors I’ve read, Gilman has great dreams for her son, and fights to help him attain them. The difference in this book is the eloquence of how she expresses these dreams for Benj: “That he be seen as whole against the sky. That he not suffer beyond his and my capacity to bear it. That he be allowed to enjoy the pleasures of 'his own private nook' and come out of that nook for joyful engagement with others. That he always hold on to his visionary gleam, his bright radiance.” This book has a bright radiance all its own. Perhaps because the visual world is so intense for many autistic individuals, there are a number of excellent autistic artists. I recently blogged about artist Ping Lian Yeak, a young autistic man who displays his artwork in shows around the world. Chris Murray, the subject of the documentary Dad’s In Heaven with Nixon is another successful autistic artist. Murray, who lives independently and has worked in several jobs for a number of years, could easily support himself through his art, but has chosen to keep it as a side project. I recently purchased Murray’s poster “Red Brick” for my office. While every artist is different, I think this work really highlights some of the strengths of autism. While the work is a cohesive whole, the details are more compelling than is often the case in more neurotypical work. Murray painstakingly represents each window, brick and taxicab. But the details don’t overwhelm, because the rhythm of the piece is so apparent. The detail I enjoy the most is that the artist isn’t constrained by taking just one point of view. Each aspect is represented from its most interesting viewpoint. The building is seen head on, the taxis driving away have a regular top down spacing, and those passing in front of the building are seen from the side. Somehow, although this is different than what we’re used to seeing in a representational painting, it works, maybe because it captures the details much the way we would notice them individually. The tension between whimsy and structure makes this a much more sophistocated work than it might appear to be at first. You can learn about the excellent documentary, and see some examples of Chris Murray’s work on the Dad's In Heaven with Nixon Movie website. More than ever, young people on the autism spectrum are going to college. Thanks to highly effective early interventions, ongoing educational assistance and, of course, the crucial support of parents, students with Asperger’s and autism are succeeding academically, graduating from high school, and looking for more education. This is great news, because those on the spectrum are frequently underemployed, and education can go a long way in ensuring that autistic adults can find satisfying and appropriate jobs.
But, it’s important to make sure these students have the support they need to take advantage of their college experiences. Most students on the spectrum, whether in special education programs or standard classrooms, have had the advantage of special services at their elementary and high schools. And all kids on the spectrum have benefited from the ongoing help of their parents. Too often, that assistance gets dropped all at once as students attempt a standard college program, without the help of special services or their parents. College presents intense challenges, not just academically, but also for executive function, life skills and social skills. For many college students, a few years at community college or junior college can be the best fit for right out of high school. These programs can allow the students to stay at home for a few years and focus extra attention on developing their independence, executive functions and social skills. Arguably, these abilities are probably more important for long term employability than academic excellence. A growing number of universities offer programs specifically for autistic students. In a blog post a few years ago I mentioned Inside College.com’s lists of Very Friendly Schools for Students with Asperger’s, and Friendly Schools for Students with Asperger’s. Recently, a reader brought my attention to 10 Impressive Special College Programs for Students With Autism. Both of these sites can provide some options for appropriate and supportive four year programs. Parents can really struggle when their local schools aren't meeting the behavioral or emotional needs of their child. Sometimes the only choice is to consider sending teens to a boarding school, a Residential Treatment program or a transitional program. It's not easy to find just the right fit, and it can be a heart breaking decision for parents. That's why I was so pleased to meet Jeanne Hughes, R.N., an Educational consultant and Member of the IECA, Independent Educational Consultant Association. Jeanne works with parents throughout the entire school placement process, to ensure the students get into the right programs, and the family’s needs are supported.
Patricia Robinson: Jeanne, how do you typically help parents in the process of finding a school or program? Jeanne Hughes: The first step in helping parents find a school or treatment program is to meet with them and learn about their child's strengths and interests as well as what issues are of concern to the parents. I ask parents to describe "the perfect" school for their child. I want to know what short term and long term goals the parents have for their student. With the parents' consent, I speak with the child's therapist, teacher(s), pediatrician, and other pertinent professionals who have worked with the student. And then, separately, I meet with the student to learn about their interests and answer their questions. All of this lays the groundwork for me to begin a school search. I try to match as many of the parents' "perfect school criteria" as possible. I speak directly with prospective schools about this student. Finally, I present the parents with several viable school options for their student. My job is to streamline the school search process for parents during this very difficult time when they are likely feeling overwhelmed. By eliminating schools which would not be appropriate for their student, I can save parents time, money, energy, and exasperation by leading them to a couple of good fits, versus striking out on their own to explore schools. I have visited hundreds of schools and programs, and share first hand knowledge of schools with parents. I want to take them by the hand and lead them through this process in a mindful, sensitive, effective manner. PR: What are the different types of programs available? JH: The world of therapeutic schools and programs has changed dramatically over the last 15 years. The best programs continue to evolve, implementing new curriculum based upon the latest research and best practices. The continuum of therapeutic programs ranges from short term wilderness programs, therapeutic boarding schools, residential treatment programs, substance abuse treatment programs, programs specializing in eating disorders, attachment issues. Some schools are "hybrid," - -- combining elements of an RTC / therapeutic boarding school . There are programs for elementary school children, teens, young adults, and adults. There are also many boarding schools which can accommodate a student with LD issues, severe dyslexia, ADHD, poor organizational skills, or who simply feels uncomfortable in his large, local day school. Some boarding schools even offer summer programs, where a student can take a few academic classes in the am, and enjoy extracurricular, fun activities in the afternoon. PR: What about transitional programs? JH: The word "transition" has two meanings in the educational consulting world. One type of transition school option is for the student who has successfully completed a therapeutic boarding school or residential treatment program, and is now ready to "transition" to a new setting. Because the shift from a totally structured program to a traditional, mainstream school is quite dramatic, often a transitional school is recommended. It is effectively a "step-down" school where there is still a lot of structure (at least initially), yet it can help the student continue to practice managing his unstructured time effectively without falling back into his old patterns of behavior. Another type of transition program refers to those programs for young adults, ages 18-25. These are programs which help students with a variety of issues, such as ADHD, immaturity, Asperger's, or recovering substance abuse students, learn how to function as an adult. Life Skills, including getting and keeping a job, living with a roommate in an apartment., planning and shopping for meals, food preparation, managing their finances, attending college, healthy relationships, etc. are done under various levels of supervision. Students meets several times a week with counselors. Vocational skills are taught at some programs. PR: How should parents get started? JH: First, be aware that therapeutic schools cost approximately $7000 per month, with RTC's often costing $10,000 per month. On average, plan to have your child enrolled 12-18 months. Most insurance companies do not cover these costs, except to reimburse parents for the direct cost of the child's therapist or psychiatrist. If your child has an IEP, he or she may be eligible for some funding through their school district and/ or AB3632 (County Mental Health). If both parents are ready and able to make a commitment to an out-of-home placement, then we can meet and get started. My contract placement fee is $5000, all inclusive. PR: Jeanne, thank you so much for talking with me about this topic. I know it can be really overwhelming for parents faced with such a tough choice, and your knowledge can be so useful for them. It's time to sign up for summer camps! Summer is a great chance for special needs kids and teens to wind down, relax and have some time to themselves. But, it's also a chance for them to catch up on social and emotional skills. Summer camps are a great way to do that.
I was excited to hear about the camp at Twenty Acre Wood Retreat. This residential camp program in the Truckee/Tahoe area is for teens and young adults age 13 and up, especially transitioning older teens, with Asperger's and NLD (Nonverbal Learning Disorder). Older campers can participate in a Counselor in Training program. I'm talking today with camp founder Dr. Meg Fields. PR: Meg, Thanks for talking with me about the camp. Can you tell me a bit about what your program offers? MF: Yes, Thank you. Our retreat is a fabulous, small group experience for youth with Aspergers/NLD to grow and thrive in the beautiful outdoors. We have a fabulous mountain retreat, beautiful and elegant and we go backpacking, the best of both worlds. We take full advantage of the opportunities the Tahoe-Truckee area offers: boating, hiking, climbing, white water rafting, games, campfires, art, music, camp stuff that is really fun (and carefully geared to our population, moderate, self esteem building levels not scary or overwhelming). Our staff is a very interesting group of trained individuals who are thinking about creating a safe environment, safe enough that individual may begin to trust and discover more “internal space” for trying new experiences and taking in the possibilities for themselves. We have many great role models on our staff. PR: What campers are best suited to your program? MF: Campers who are wanting to develop new aspects of themselves (possibly unknown to themselves, not yet named). Youth who have desires for more but aren’t sure how to move in those directions. Youth who just want to play and have fun are welcome!! But most of our campers have deep important wants that they aren’t quite sure how to accomplish; we want to help them stretch (a bit at a time). PR: What skills do you expect campers to come away from camp with? MF: Backpacking and bonding is an amazing unusual and rewarding experience. I expect they will feel proud and accomplished and I know they will feel very acknowledged for who they are and what they contributed, whatever their special attribute may be. People need acknowledgment and appreciation. PR: What about campers who have never been away from family before? MF:If you’ve never been away you may feel homesick. It won’t surprise us and “transitional objects” we understand (things that may help with the difficulty of not having your regular support available). We have worked with individuals who feel sadness and fear, that’s what we do. (It is helpful if parents don’t begin by saying “if you don’t like it you can come home”). Let us do our work and we will call if we need home support, we don’t want a traumatized camper, we will intervene as needed. We believe it is a big experience and we honor it as such. PR:Meg, thanks for sharing for about the camp! To sign your camper up, please visit the website at http://www.aspergersretreat.com/ The Center of Attention and Learning, in Albany, California, offers ADHD coaching, Executive Function support, and Educational Therapy. The Center, founded last year by Educational Therapist Linda Lawton, is now offering their first working group for adults with ADHD. The group will meet three times per month, and each month will focus on a different issue, starting with procrastination.
Group coaching is an excellent way to get both professional and peer support, and it is more cost effective than individual treatment. If you’re interested in more information, visit the Center’s website, or their Working Group information page. And, for Middle School and High School Students, check out the Center’s Supervised Study Hall. Author's note: 2/13/12, the Supervised Study Hall is no longer offered, but I will be posting about a new program soon. Ed Rev 2011 will be held on Saturday, April 16, 2011 at AT&T Park. Ed Rev 2011 is "a day of inspiration and resources for students with learning and attention difficulties, and their parents and educators." The day includes speakers, activities, and an art contest. Whether or not you can attend, it's worthwhile to check out the excellent list of exhibitors and resources. Check out the brochure.
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Patricia Robinson MFT
I'm a licensed therapist in Danville, California and a coach for Asperger's and ADHD nationwide. I work with individuals of all ages who have special needs, like Autism Spectrum Disorders, ADD, ADHD, and the family members and partners of special needs individuals. Archives
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