On the Road With Autism

My journey of discovery. I welcome your comments!



SAD, CONCERNED ABOUT the EDUCATION for Students with AUTISM

I am having a hard time understanding why we are not doing a better job at educating and preparing children with Autism when we understand more about how these children learn than ever before, have more support curriculums and choices of interventions than ever before.

Why is it so hard for the education field to design & implement school programs for children with Autism? Why are these children still suspended from schools, parents forced to stop work so they can pick their son or daughter up at school when things aren’t going well or sent to private schools outside their districts so that families feel the lack of belonging in their own communities? Why are private schools not able to offer a full variety of educational practices? Why are these children also leaving the schools unprepared for their next steps?

We have Universities who have created credential programs that say they address Autism. The Occupational Therapy Departments are talking about Autism. The Speech & Language Departments are talking about Autism & of course the psychology departments are invested in Autism. We have created a huge industry of BCBA personnel who say they can support families and schools. The bookshelves are lined with information, workshops are presented all over the state of California & out of state. Autism Speaks has made it National Known that 1 in 68 children are born with Autism.

Ted talks hit the social media across the world on Autism. Movies have been released on autism. Plays are presented on Autism. Every newspaper imaginable has posted an article on autism.

What is it? Why is it that I still get calls from desperate parents, crying? Why is it I still walk into classrooms & see a stapled pile of dittos being placed in front of these students as the only intervention for learning math, language arts, science or history & the teachers wondering what they can do to keep them engaged? How can a student get sent to a private school at the cost of $60,000 to $80,000 a year & still not be prepared for the next step?

Why does it have to cost so much money to figure out how to help our students communicate, take care of their daily needs, learn to their potential, find a way to develop friends and gain control over their sensory & feeling differences?

Are we spending more money on research instead of educating & training teachers, therapists & families? Has our education system made teaching so difficult that the idea of teaching no longer is exciting to our college graduates? Are we not accessing effective interventions? Are we hiring just because someone has a license & not the education or experience due to shortages? Are our budgets so tight that we cannot provide support for the teachers once they are in these classrooms? Are we expecting our teachers to handle more students than they can at one time? Do we have to put more students in a classroom that is truly therapeutic just to make our payrolls?

Are our Universities failing? When was the last time a teacher at the college spent time in the classroom managing a child with autism? What materials are they teaching from? Does each university provide effective mentoring? How can a student take a weekend credentialing program in Autism & be prepared? How can students just take classes on line & be prepared? What have we sacrificed for quickness & media ability?  Are the training programs truly effective? Why is it that tuition at colleges is so high, loans are needed? What have our graduate students received for $40,000 a year!!!!

I can’t help thinking that it is all of the above & that we need to take a careful look at what’s happening & find ways to repair.

We have the knowledge. We have the technology. Certainly a great deal of money is being spent.

Perhaps all this Mindfulness infusion into our culture needs to be infused into our administration at every level (credentialing departments, universities, private & public schools, agencies, centers, clinics, government) & allow the time to find real solutions instead of plugging holes in the dam.

Perhaps we need to get away from our screens, come face to face with each other, turn the systems upside down & actually see where they are working & where they are not working. Perhaps we need to stop competing & do more collaborating/sharing between districts, universities, centers, schools & clinics. Perhaps we need to look at how the salaries have sky rocked just like home prices did, leaving more people without possibilities.  

Perhaps everyone needs to take some long breaths instead of holding them & hoping to survive the day.

I started in this field when we knew very little but it was a time when those who cared about Autism came together to find solutions. It is now 40 years later & I am wondering what has happened!!!

What do you think happened? What are you willing to do about it?

First Breathe deeply.

So Many Important Questions for Families & Professionals

1)What is the proper way of learning for a child with autism?   Every child with autism may have a different learning profile as autism is a spectrum disorder. Their way of learning will be influenced by their communication levels, cognitive levels, sensory challenges, motor challenges & social awareness. It is believed that the best program for all on the spectrum is some level of structure, emphasis on visual supports, addressing executive functioning challenges, understanding, addressing & accommodating sensory challenges, supporting motor challenges, developing joint attention & social reciprocity, teaching social rules & identifying the interests of the student & using those interests to engage them. A program must address the anxiety of the student with autism, his or her challenges with starting tasks or getting stuck, the child’s black & white view of situations & their ability to assess how big a problem really is & to find solutions.

2) How does one set academic targets for students with autism in an inclusive classroom? Every student should be assessed in order to identify their cognitive levels, identifying strengths & weaknesses. Academic targets should be set from the results of the assessment. Teachers need to look at reading levels (decoding and comprehension), writing skills (motor & composition), mathematics (calculation & problem solving), spelling & their cognitive levels (comprehension is key to setting realistic academic targets)

3)Are there any home treatments for children with autism whose parents are busy working? Many families must work all of the world. In some parts of the world, there are agencies who can come into the home & train the parents or someone that the parents have hired to support the child when the parents are working. These support people need to understand autism & particularly the specific child being supported.   These people could go to school & observe & learn from the teachers how to support learning (reading, math, homework). These people could be trained to help develop the child’s independent living skills. Some parents may need to decide not to work & become the child’s teacher of home skills. In some countries parents keep their child at home & work with the home school associations. They have on line curriculums they can access.   Home treatment is up to the parents to develop & guide. They must locate organizations, pay organizations to come in to help support their son or daughter’s home learning.

 4)When is it the right for teachers to encourage children to maximize their potential? A teacher’s job is to inspire a child to learn when they are very little. Learning should be fun and engaging. Parents and teachers should encourage a child to learn all the time. It is a matter of making learning meaningful to the child. So one must know where the child is developmentally. Then learning can be structured around their level of understanding, communication and interests. I believe that children with autism need to start young to learn.

 5)How do we help children with autism learn better?   First teach at their level of understanding. Next make learning fun. Next make learning meaningful. Use their interests. Then structure each learning activity visually. Then praise for every little step forward. Work with a speech therapist. Work with an occupational therapist. Work with an educational specialist.

 6)How do we deliver effective education to children with autism and mental retardation? Once again, every child learns differently. A child with lower cognitive ability must have things presented at their level of understanding. A child with lower cognitive ability will need more practice more, have smaller amounts of work & many visual supports. They must have a way to communicate first &foremost. (Signs, Pictures, Technology). All teaching must be meaningful. Use their interests. What is taught should be functional (truly occur in their daily lives). Teaching must be structured. Small classroom size. Calm environment to learn in.

 7)What is the impact when a child learns one thing from one center and something different from another center? I believe that there needs to be collaboration. If a child is going to two or more centers for treatment then a collaboration time needs to be designed. All specialists should be sharing what they are doing & how on a regular basis!!!!! Children need consistency. The interventions that work should be shared & embraced by all.

 8)How to teach children with sensory integration challenges? Once again, each child has differing sensory challenges. Some are visually distracted. Some auditory distracted. Some are sensitive to touch, taste or smell. A sensory profile should be completed, identifying the challenges & then a sensory diet develop by the Occupational Therapist.   Some students are over aroused while others under aroused & different exercises & supports need to be put in place depending on the sensory integration issues they present.   Teachers need to then modify the classroom environment to accommodate sensory challenges. Teachers may need to modify the learning schedules in the classroom due to sensory challenges. Special equipment may need to be used to support sensory needs. Sensory integration is an individually based intervention.

Expanding Our Knowledge

The 2014-2015 Series…..Expanding Our Knowledge

This was an amazing series to develop & support.

The September 2014 lecture showcased Dr. David Traver M.D. from Foster City, a pediatrician who became interested in the Autism Spectrum Disorder when he was at Neuropsychiatry Clinic at Stanford Medical Center’s Division of Child and Adolescent Psychiatry. He became familiar with the biomedical approach to treating Autism as well & integrates his practices. Dr. Traver presented on The Biomedical Approach to Autism. He suggested parents look into gastrointestinal, nutritional, biochemical, metabolic & immune issues in their children. www.dptmd.com 650-341-5900

The October 2014 lecture, Using Music to Enrich the Lives of Children with Autism Spectrum was presented by Ian Wilkerson, MT-BC NMT founder of Bay Area Music Therapy. www.bayareamusictherapy.org Ian demonstrated how Music Therapy can improve cognition, physical skills, social skills and support emotional challenges in youth and adults with Autism. He even discussed the use of music through technology.

My November 2014 Lecture: with Liz McDonough, MFT/Drama Therapist, http://lizmcdonoughmft.com/ presented on the Social-Emotional Terrain from Adolescence to young Adulthood for those on the Spectrum. Liz demonstrated how she incorporates drama therapy, psychodynamic and cognitive behavioral approaches in helping teens & young adults navigate the social and emotional challenges of school, work and life in general.

Then our January 2015: Reading Strategies That Work for ASD Students was presented by Beth Powell, BS/MS and Director of the Reading Clinic www.thereadingclinic.com . Beth focused on addressing the comprehension challenges of children on the spectrum encouraging all of us to pay careful attention to this key factor and suggesting that the teacher and the speech and language therapist work hand in hand to address a student’s understanding of what they are reading. She let us know that it is important to develop visual imagery. The student must be able to see what word means. Can they describe what a picture is telling them? Can they make a prediction about what happened before or may happen after in the picture?

The February 2015 lecture showcased Dr. Peter Clive Mundy, professor of Neurodevelopmental Disorders & Education in Psychiatry, Professor of Education & School of Education & Director of Educational Research M.I.N.D. institute University of California at Davis. He presented on Elementary & Secondary Education for Autism. Dr. Mundy showed us how the lack of developing joint attention can affect all future learning opportunities & emphasized how important that curriculums address this key feature so students can experience success in school. Teachers & speech & language therapist all need to work collaboratively on developing joint attention. Joint attention is key for developing social relationships, reading comprehension and communication.

Our March 2015 lecture featured Dan Phillips, MS CCC-SLP from the Technology Resource Center of Marin, http://trcmarin.org/ who presented on Supporting Curriculum and Communication with Technology. Dan shared a variety of apps that can be found on the tech. center’s web site that work amazing for students with ASD (Bitsboard, Choiceworks, Bookshare, Tar Hee Reader, Pictello, Story Creator, Book Creator, Co-Writer, Clicker Docs and Proloquo 2). He stressed how important it is to find apps that can be individualized with interests of the student and individual information about the student. He stressed that we should choose apps that can be programed to speak and can also use email to send communications to the student’s family.

Our May 2015 final lecture was given by Jennifer Griffith, MSW, ACSW Regional Director of College Living Experience www.experiencecle.com , a post-secondary support service for individuals with special needs & varying exceptionalities between 18 & 28 years of age. Her lecture Preparing Students with ASD for a successful Post-Secondary educational experience was a very timely lecture. She advised that our high school programs develop self-advocacy, independent living and social connections. She spoke to the parents about teaching their sons & daughters to pay their own bills, live on a budget, help manage their medical needs and learn to navigate in their community. All these steps will help prepare their sons & daughters for a post-secondary experience.

Wisdoms of the 2013-2014 Lectures

The 2013-2014 Autism Lecture Series Full of Wisdoms

It was a great year. I was delighted bringing such wonderful state of the art information to families, students & professionals

September 2013 was honored to support Dr. Neal Rojas, Board Certified Developmental Behavior Pediatrician from University of California SF. Problems with Evidence Based Autism Interventions was his theme. Many families find interventions that cannot be proven through evidence based studies but no less have helped their son or daughter. Dr.Rojas introduced the guests to some of the state of the art interventions for ASD (TEACCH, ABA, DIR/Floortime, Denver Model, Speech & Language Therapy, Occupational Therapy, and Social Skills Instruction) and then helped us explore Alternate Therapies (diet, supplements, gastrointestinal issues, seizure management and pharmacotherapy).

October 2013 showcased the work of Dr. Kari Berquist, Ph.D, BCBA-D from Stanford University School of Medicine. Evaluating ASD & Related Disorder Interventions: A Parent Group Approach was her topic. She strived to open our eyes to the importance of families becoming excellent consumers in deciding on and evaluating programs for their children. Her group has been educating parents in evaluating practices for their child’s profile. The program has emphasized parents understanding what each intervention is supposed to do and evaluating if it has truly happened. Her group focused on teaching parents effective decision making processes when looking at programs and keeping their children in them.

January 2014 was a power lecture “Hear our Wisdoms” featuring three fathers with sons on the spectrum & a grandfather with a grandson on the spectrum. Each speaker told his story about their son or their grandson with autism. They each communicated how important it was to spend time alone with their family member, to accept them for who they are 7 never give up hope. One suggested that you find the little things that occur in the lives of your family members with autism & appreciate them. They all encouraged fathers to reach out & connect with others. They all realized how important it was to support the other siblings in the family or their own daughter & son-in-law as they support their child with autism. They all suggested finding a higher source to connect to as well.

February 2014 “Moms…The Wisdoms of Our Voices” was also very compelling. Three moms with sons & one with a girl told their stories of fear, anxiety, frustrations and acceptance. They spoke about their learning curve in the field of education and the fights they encountered along the way to get their children assessed, understood and supported in the school system. One mom brought a pair of boxing gloves that she has kept hung in her room to remind her that the fighting for hope will never stop even as her son enters adulthood. They all encouraged others to find the right team of experts to help. They all stressed the need to connect with others experiencing similar challenges. They all stressed the need to take care of themselves so they could take care of their children and other family members.

March 2015 “Understanding how illness can present as Behavior Challenge; a practical approach for looking at behaviors of people with special needs through a Health-Minded Lens was presented by Dr. Clarissa Kripke, Clinical professor of Family and Community Medicine at UCSF. Dr. Kripke reminded us to “Think Medical” first when we see behavior (migraines, hearing, vision, dental or injury). Think Urinary tract (infections & obstructions). Think reflux and gastrointestinal problems. Think seizures & side effects of medication. Behavior can also signal (abuse, escape, social attention, stressors, control, and reduction of anxiety). Remember all behavior is communicating something. Also remember that the caregiver could be the answer due to their anxiety, stress, training or support. She advised families to chart (bowel movements, periods, seizures, medications, behavior, mood, movements, strength, & energy). These can all lead to behavior challenges. Her advice was to improve body functions & structures, increase activities, improve the physical environment, improve their quality of life & develop skills.

May 2015: Laura Briggin, Cypress School Director with her MS in Special Education & holding her Board Certified Behavior Analysis license presented last in the series. “Real Work for Teens and Adults with ASD & Similar Developmental Challenges was her topic. Laura started out emphasizing the need to make sure that a student’s IEP (Individual Education Plan) addresses transition issues very early on. When it is time to develop the ITP (Individual Transition Plan) inviting future adult employment supports to the meeting are key. All plans should be built on the student’s personality & his or her interests, strengths & abilities. The IEP and ITP should address the student’s areas of need (communication, sensory, executive functioning, social, visual thinking) for them to be successful in a working environment. Thoughts need to be given on the jobs & types of environment the person will be successful. She suggests drawing a Vision Plan with each student (college, work, living, play). Start with their strengths & likes. Then identify the skills needed & start teaching them. Provide many opportunities for the student to volunteer in their community developing ideas for future employment. Students need self-awareness, career awareness, career preparation & work experience before they leave school.

The Research Road 2012-2013

This was a year of bringing the researches together to provide hope to families & professionals.

In September 2012 I introduced Dr. Ruth O’Hara to our community so she could talk about her research in the area of Autism & Sleep. Dr. O’Hara is an Associate Professor, Associate Director, Sierra-Pacific Mental Illness Education & Clinical Center (MIRECC) Director, National Fellowship Program Advanced Psychiatry & Psychology, Department of Psychiatry & Behavior Services, Stanford University School of Medicine. Dr. O’Hara announced that 44% of children with ASD suffer from sleep initiation, 31% from sleep maintenance & 30 with early morning awakening. Dr. O’Hara let us know that Iron deficiency can cause sleep problems. Epilepsy, reflux & sinus problems can also affect sleeping. She said inadequate sleep hygiene, excessive light, noise or temperature of a room can affect sleeping. She said there could be a Melatonin deficiency, sleep apnea or restless legs syndrome affecting sleep. She encouraged families to connect to the sleep clinic at the hospital and get involved with the research study.

October 2012 brought Dr. Grace Gengoux, Clinical Instructor in the Department of Psychiatry & Behavioral Sciences at Stanford University. Her topic was Naturalistic Behavioral Strategies for Promoting Language & Social Development. She gave an overview of Pivotal Response Treatment (PRT). This strategy focuses on the relationship with the child, taking their lead and occurring in natural settings. Learning must be motiving she suggests. She reminds us that our kiddos with ASD are hard to motivate and they will engage faster if they are interested and it is meaningful or their choice. She stresses that Natural Reinforces promote generalization of the skill. She strongly supports our kiddos learning how to initiate & use cooperative activities where others must participate & have a role. She feels the parents make the best therapist two work with their child & so training them is key.

In November 2012 Dr. Peter Clive Mundy did his first appearance at the series. Dr. Mundy was working on a first volume manual entitled Autism for Educators. His work on establishing joint attention with kiddos on the spectrum is being worked on at the MIND Institute & is a joint venture with Stanford & University of Southern California in his SAV-Lab. When a child cannot follow a reference and share information with another, their learning will be impaired as well as their social engagement and communication.

January 2013 kicked off the New Year with Dr. Lisa Crone from Kaiser Permanente’s Genetic & Environmental Research Department. Dr. Crone’s Twin Study is a federally funded autism study. She described the project of looking at pre & perinatal methylation in the mother & father & child & the changes in DNA. Her study hopes to identify Biologic markers in genetics & environmental exposure. Another study will be looking at over 1200 mothers of children with autism at the start of a new pregnancy and follow them & the new baby through 36 months. She described the work of the Autism Treatment Network collaborating & being able to look at large samples & drawing better conclusions.

The February 2013 “Combining the Senses to Make the World Whole: Multi-Sensory Integration Deficits in ASD” was presented by Dr. Clifford Saron, Associate Research Scientist at the UC Davis Center for Mind & Brain. Dr. Saron first demonstrated how combining sensory information helps most of us detect & discriminate incoming information but so with the ASD population. There is known that people on the spectrum have challenges integrating sensory information & thus have challenges responding to their environment. Where typical people have a greater chance of identify something in their environment with cross sensory information (visual & auditory) this is not true for people on the spectrum. One may confuse the other. Dr. Saron suggested we create environments conducive to learning for our kiddos on the spectrum and remember their processing is different & must be understood & accommodated. He also believes strongly in having our kiddos engage in meditation to help sensory arousal and focus.

The April 2013 lecture with Dr. Robert Hendren, the Vice Chair of Psychiatry, Director of Child & Adolescent Psychiatry at UCSF, “Combining Clinical Evidence with Innovated Research brought some great information to families. Dr. Hendren really helped us to expand our vision of treatments. He invited us to realize that there will be different treatments at different levels. We must look at DNA, RNA, Cells, Physiological processes, Neuromodulators, Brain structure & Cognition& develop different interventions at each level. There may be biomedical treatments looking at immune & inflammation issues, Mitochrondrial function, Methylation, Oxidative Stress & Neurotransmitter production. He wanted us to know that UCSF & MIND were looking at Vitamin D, Omega3, Pancreatic digestive Enzymes & Methyl B12 treatments. He discussed studies on Memantine (Namenda) for socialization and N-Acdetylcystein (NAC) for irritability and Oxytocin for socialization. He discussed the use of Melatonin for sleep challenges. Dr. Hendren supports an integrative approach to ASD (Medical, Ancillary (Speech & Occupational Therapy), Behavioral, Pharmacology & Biomedical)

We ended the series in May 2013 with Dr. Elysa Marco from the UCSF Autism & Neurodevelopmental Center, Director of Research UCSF Department of Neurology, Psychiatry and Pediatrics and Assistant Clinical Professor of Child Neurology. Her topic was Sensory Processing in ASD & other Neurodevelopmental Disorders: From Scanner to School. Dr. Marco has been leading incredible research in the area of sensory processing & integration in clients with autism. It is clear that her research may indicate that the sensory processing challenges in these children cause many of their communication and social interaction challenges. Not only is her research indicating our kiddos hear, see, feel differently than their typical peers but when stimuli is presented simultaneously the integration is different. In order for our kiddos to learn and integrate their sensory processing challenges have to be considered. Classrooms, work spaces and homes will need to adapt for their success.