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Creating a Relationship of Trust: Professionals and Adults with ASD

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Creating a Relationship of Trust: Professionals and Adults with ASD

By Carolyn Ogburn, MLA
Autism Asperger’s Digest  May/June 2014

“Our first task in approaching another people, another culture, another religion, is to take off our shoes, for the place we are approaching is holy. Else we may find ourselves stepping on other people’s dreams.” ~ Max Warren

She was quiet a long time. I sat beside her, heart in throat, but accepting any response she might offer. Then she turned to the computer keyboard that we were sharing, and typed, “OK, I will try it.”

She agreed to try because she trusts me. Trying any new thing is hard, and will always be hard. My part of the agreement is to try to make it easy for her. We will work until, together, we find a system that can support a new behavior or pattern of communication. The plan we’d made together—to use a series of pictures to organize her day, including sensory breaks—might help decrease her stress, which is associated with exhaustion and other aspects of her life for which she’s come to me, seeking relief. Or, because it’s new or because it’s not quite what she needs, our new system might increase the very things she’s trying to eliminate. “We’re just gathering data,” I’d typed earlier. “We need more information.” And she has agreed to try it. Because she trusts me.

There are a lot of skills and strategies that, as professionals, we study and share with each other. We’ve learned the diagnostic characteristics of people on the spectrum, their differences in social understanding, intense interests, reliance upon routines, and sensory processing differences resulting in unique environmental stressors. Understanding the characteristics of autism spectrum disorder (ASD) helps the professional better understand the cognitive, sensory, and behavioral needs of the client, but it leaves out one element that I’ve found to be crucial in working with adults on the autism spectrum: the importance of trust.

While ASD itself isn’t traumatic, the result of growing up with undiagnosed ASD can be. If the person on the spectrum is an adolescent or an adult, she’s usually had many years of trying to fit in with her peers, with mixed results. Memories may offer detailed histories of seemingly inexplicably failed social overtures. Over the years, ordinary sights, sounds, or tactile sensations—bright sunlight on a snow-covered bank, the clamor of a school hallway during class changes, or the unexpected throb of another driver’s sound system—may have been experienced with traumatic intensity. Due to differences in social interpretation and communication, she’s had occasions in which she’s too easily trusted someone who has undermined her trust, whether intentionally or not. She’s often experienced some combination of physical or emotional abuse. And, many times, she’s not trusted someone who might have helped her.

Educators are starting to realize the ineffectiveness of trying to use standard behavioral interventions with neurotypical children who have experienced trauma. In “Schools That Separate the Child From the Trauma” (Bornstein 2013), special educator Susan Cole says “It’s about creating a common context that keeps kids feeling safe.” And, Jane Stevens, health and science journalist and editor of ACES Too High, says “Educators understand that the behavior of children who act out is not willful or defiant, but is in fact a normal response to toxic stress. And the way to help children is to create an environment in which they feel safe and can build resilience.” [emphasis, Ogburn]

In dissertation research, Kammie Bohlken Lee (2010) found that college students with ASD identified four main qualities as being valued within their friendships: trust, support, connection, and shared interests. In other words, much like what most neurotypicals value. The difference, I’d suggest, is that trust is a more fragile bond for adults with ASD than for their typically developing peers. As with children who’ve experienced trauma, people on the spectrum must have an environment in which they feel safe in order to develop new skills.

At our next session, my client brings with her the adaptation of the picture schedule she created during the week. It’s something I never would have thought of, and yet looking at it, I see immediately how it works. I remember her words from the week before: “OK, I will try it,” and realize that she knew, even then, that what I’d offered her wouldn’t quite fit, but she hadn’t had the ability to say so. Yet she’d trusted me and brought something that would work better. “Thank you,” I tell her, then I write it down: “You have taught me more information about what makes sense for you. Thank you for communicating this to me. It helps me!”

Michael John Carley wrote that, in considering the issue of trust and ASD, “It is the partner without ASD who not only must first accept the obligation to change, but also make the greatest effort toward developing trust” (Prizant and Carley 2009). In my experience, it’s almost always the person with ASD who is working harder to maintain the relationship than is the neurotypical person; that the neurotypical partner must accept the responsibility to change is the first step in developing a relationship of trust. It is not obligatory that the person on the spectrum accept these efforts.

When I first started working with people on the spectrum, I found that each person was like her own private club: as long as I followed the rules, she was delighted to have me join her club. I still find this a useful metaphor for work I do, and the interactions I have. Every encounter is a reminder that I could, at any time, be barred from the club. I could, at any time, unintentionally act in a way that re-opens wounds of misunderstanding, violence, and abuse. The most dangerous element in any environment for a person with ASD is usually another person. And, sometimes, that person is me. Although this knowledge can be disheartening, I wouldn’t be doing my job if I didn’t keep this foremost in my mind. While both of us participate in cocreating a working relationship, it’s my responsibility to take the first steps to create a relationship of trust.

These are some ways I have found to encourage trust in my relationships with adults with ASD:

  • Provide communication helps (e.g., computer typing; augmentative and alternative communication devices—even pencil and paper; written information in the form of pictures, checklists, or diagrams)
  • Offer written multiple choices rather than open-ended questions, always including the option of “Something else. It is _________________________.”
  • Create an environment that is structured to minimize sensory distractions.
  • Avoid demanding (or expecting!) traditional social interaction.
  • Set aside your own goals for the person; instead, wait to learn what her own goals might be.
  • Be flexible in scheduling. Sometimes due to an individual’s processing speed, providing 90-minute sessions with communication breaks, rather than 60-minute sessions without breaks, often results in a more effective use of time.
  • Ask for more information, rather than interpret or assume what the person might mean, or worse, speak for her.
  • Listen. Often people with ASD have learned to seek “the right answer” with initial responses and require additional processing time to communicate their true response to direct questions.
  • Work from a vantage point of data collection, rather than goal direction. Even a system that does not result in achieving the desired goal can provide new information, which is helpful in working toward more effective life choices.
  • Acknowledge successes. Difficult times should be seen not as the result of personal failures but as opportunities to practice new skills.

 

BIO
Carolyn Ogburn (c.a.ogburn@gmail.com) worked for the TEACCH Autism Program from 1998 to 2013. She can now be found at TAG-Asheville, working to promote self-acceptance and self-advocacy based on the principles of neurodiversity.

References
Bornstein, D. 2013. “Schools That Separate the Child From the Trauma,” The Opinionator (blog), New York Times, Nov. 13. http://opinionator.blogs.nytimes.com/2013/11/13/separating-the-child-from-the-trauma/?src=recg&_r=1

Lee, K. “Understanding the Friendship Processes of Individuals with Asperger’s Syndrome: A Phenomenological Study of Reflective College Experiences.” PhD diss., The College of William and Mary, 2010. ProQuest LLC. http://eric.ed.gov/?id=ED517591

Prizant, B., and M. J. Carley. “The Primacy of Trust.” Autism Spectrum Quarterly, Winter 2009.

 

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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Comments

  1. Celine says:

    thanks for writing and sharing this article. I am wondering, what is the difference between ASD and Asperger’s? I am new to this domain. Thank you very much.

  2. The line that speaks the most to me as the parent of a 28 year old young man who’s on the autism spectrum (ASD) is in paragraph 9: “The most dangerous element in any environment for a person with ASD is usually another person.” I know it’s true but this is the first time someone has given words to that thought. Yes, at first glance, it’s “disheartening” but, I wonder – as my son and I navigate the path of advocacy, if it can be turned into a teaching tool – become part of a dialogue that has the intention of creating a rewarding work environment for co-workers where everything starts with conversation. Think I’ll see what my son and I can do with this!

    • Thank you for your comment, Kathy. Recognizing the difficulty – as well as the importance – of trust in relationships with ASD adults has been one of the great teaching tools for me in my work.

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True Inclusion through Music

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True Inclusion through Music

Stephen Shore, EdD

Autism Asperger’s Digest  May/June 2013

You may read the full article on Stephen Shore’s website.


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Trouble Finding a Job?

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Common Barriers to Employment for Individuals with AS
by Barbara Bissonnette
Autism Asperger’s Digest
| May/June 2011

Nearly two years after receiving his college degree, John had still not been able to find an entry-level graphics job. “I keep sending out resumes,” he sighed, “but I never get called for interviews.” Anna, on the other hand, was averaging two or three interviews per month. Nine months into her search for an administrative position, she couldn’t figure out why she wasn’t getting past the first interview. “Do you think I’ll ever get hired?” she asked. Week after week, Richard didn’t send out any resumes. “I’m not qualified for anything,” he explained.

In my coaching practice, I work with a lot of people like John, Anna and Richard. They are bright, college educated and skilled. They want to work. Yet they struggle on, month after month, without success. This article describes the most common employment barriers I encounter among individuals with Asperger’s Syndrome and high functioning autism (AS/HFA), and suggests what to do about them. If you have been struggling to find work, see if one or more applies to you.

Barrier #1: Missing key qualifications. If you are responding to lots of job openings but not getting interviews, you may lack critical skills or experience. Job ads contain a mix of required and desired criteria. The non-negotiable items are usually indicated with phrases like: “extensive/verifiable experience required in …;” “must include;” and “do not apply unless you meet these requirements.” Negotiable skills are described with phrases like: “the ideal candidate will have;” “xyz experience preferred/desired;” “is a plus;” and “should be familiar with.”

One way to determine whether you have the needed skills is to perform a discrepancy analysis. Print out four or five job openings that interest you. Read through each description, and circle all of the requirements that match your background. If there is a requirement for a four year degree and you have one, circle that item. If you have experience using a specified piece of machinery or software program, circle that, too.

Then, read through each ad again, and this time, underline the requirements that do not match your background. Review the underlined items carefully. If the discrepancy is a minor one, such as not having a “preferred” skill, then you should apply. But if you lack significant requirements, you need to broaden your skill set or look for a different line of work. After doing this exercise, John realized he needed to learn Web programming to be employed as a graphic artist.

Barrier #2: Being too literal or inflexible. Richard took job listings so literally that he disqualified himself from nearly every opening! For example, if a job required good people skills and the ability to multitask, Richard would not apply. Yet the definition of good people skills and multi-tasking can be very different depending on a particular job and company. Richard and I began looking at the context in which these skills would be used. He agreed he would not have trouble communicating with co-workers in a warehouse, but that interacting with customers at a cash register would overwhelm him. Similarly, Jill realized that multitasking at a small, local real estate office would probably be manageable, whereas multitasking in the marketing department of a major software company would not.

Flexibility is also important. Rejecting jobs that do not match your ideal 100% probably means you won’t be working. Steven didn’t apply for an editing position because “occasional evening hours” were required. “I eat dinner at 6:30,” he explained. More than a year after getting his degree, Steven was still unemployed.

Barrier #3: Responding only to posted job openings. According to the US Department of Labor Statistics, only 5% of people find jobs by submitting resumes for posted openings. Yet many people make this 100% of their job search strategy! A whopping 48% of people find jobs through networking; 24% via direct contact with an employer; and 23% through employment and other agencies. You will greatly increase your chances of getting hired by adding even one additional strategy to your job search plan.

Job search strategies include posting your resume on Internet job boards; contacting a recruiter or employment agency; strategic volunteering to gain experience and make contacts in your desired field; joining a professional association; and the most important one of all, networking.

You probably shy away from networking because it involves social interaction with people you don’t know. Yet this is how most people find jobs. Rather than avoid it, make networking manageable by meeting people one-on-one and online.

Informational interviewing is an effective way to network if you are new to the job market or want to change careers. This is not a job interview. It is a way to learn about a career by talking to people who are currently working in the field. You can ask questions about what the work is like, how to break into the field, where the best opportunities are, and ask for the names of other people to contact. Sarah left one informational interview with five new contacts. One will be hiring several researchers over the next few months.

The Internet also offers networking opportunities. Join industry-specific online networking groups and connect with people in your field. Establish connections by asking questions, responding to posts, and starting discussion threads of your own. LinkedIn (www.LinkedIn.com) is a large, business-oriented networking site with hundreds of online groups. Andy joined two groups for meteorologists and within three weeks found out about a job opening in his area.

You can also create a LinkedIn profile, at no charge, that describes your background and career interests. Once you create a profile, you can invite individuals you know to join your network. People may invite you to link with them as well. Increasingly, employers are searching LinkedIn to find qualified candidates for jobs.

Barrier #4: Ineffective resume. The purpose of a resume is to demonstrate how your talents, skills and experience will answer an employer’s needs. Your resume should include information relevant to the position you are seeking now. It is not a review of every single task you performed at every job you have ever held. Whenever possible, include examples of how you saved money, improved efficiency, increased sales or otherwise made an outstanding contribution. Bill’s old resume described his experience at a museum like this: “wrote newsletter articles and Web content.” His new resume says: “Selected topics and wrote feature articles for monthly newsletter distributed to 3,000 museum supporters; developed new Web content that increased traffic by nearly 25%.”

Barrier #5: Poor interview preparation. I have had clients who are veterans of 20, 30 and even 40 job interviews, but receive no job offers. Clearly this is a sign of inadequate interviewing skills.

Your goal at an interview is to demonstrate that you have the right skills and experience for the job. It is not aggressive or boastful to talk about your abilities and accomplishments—provided you are not monopolizing the conversation while doing so! You must also show you can “fit in” and interact effectively with others. This translates into having certain social skills that are sometimes difficult for individuals with AS/HFA. Pay particular attention to your body language. Making eye contact, smiling, sitting up straight in your chair, and other nonverbal gestures convey interest and enthusiasm for joining an organization. If you are not comfortable talking one-on-one with another person in a business setting, learning to do so is your first priority.

Practice how to respond to anticipated interview questions in a way that focuses attention on your abilities and minimizes your challenges. When asked to describe his weaknesses (a common interview question), Tim would reply, “I can’t make small talk and don’t like working in groups.” Although these statements are true, within the context of a job interview they create a negative impression. Now when Tim is asked this question, he explains that he can be a perfectionist, but has learned that meeting deadlines is more important than fussing over every detail. This answer is also true, and fits within the context of an interview. (Notice how Tim applies some marketing savvy by explaining how he manages his weakness so it won’t interfere with job performance.)

There are many books and Web sites that offer advice about how to answer interview questions. If you are uncertain about how to apply that advice to your situation, get some help from a knowledgeable friend or a professional career counselor or coach. Be sure you understand the purpose of common questions. “Where do you want to be in five years?” refers to your career, not where you want to live. The social challenges inherent in AS/HFA can make it difficult to glean the “hidden” meaning behind certain questions an interviewer asks. This is why practicing mock interviews is so important, and helpful. It may feel uncomfortable at first, but with practice, it will get easier and you will feel more confident. Use bullet points to remind yourself of the things you want to say. Memorizing answers word-for-word can sound disingenuous.

Barrier #6: Not spending enough time on the job search. Finding a job requires consistent effort over time. Spending two or three hours per week surfing Internet job boards is not an adequate plan. To be successful in finding a job you will need: at least three different search strategies; a daily plan with specific actions; three current references; a cover letter template that can be customized for each job you apply for; an up-to-date resume; and a plan for following up on job leads and interviews. You should also set aside time to practice interviewing.

Looking for a job is a lot of work. Eliminating these employment barriers can make the process faster, easier, and more successful.

BIO

Barbara Bissonnette is the Principal of Forward Motion Coaching and specializes in career development coaching for individuals with Asperger’s Syndrome. She is the author of Asperger’s Syndrome Workplace Survival Guide: A Neurotypical’s Secrets for Success, available at www.ForwardMotion.info.

Copyright © Autism Asperger’s Digest. 2011. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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Transitions Without Tantrums

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Teacher to Teacher

Transitions Without Tantrums

By Pat Crissey

Autism Asperger’s Digest | March/April 2012

Having difficulties with transitions is a common behavioral characteristic of young children with autism spectrum disorder (ASD), and often the child has the most resistance when our patience is at its lowest point.  So, what can teachers do to help? Most teachers have a strategy or two up their sleeves for dealing with transitions, such as using a schedule or giving a pre-warning, yet for some children problems persist.  In most instances children can learn to transition smoothly if the teacher provides a wider array of strategies, applies them effectively, and gives the child sufficient time and practice to establish the new behavior.

Gather Information

The first step is to gather as much information as possible to understand why a child struggles with transitions. When do the problems arise, and what is the function of the behavior? What is the child gaining or avoiding by his resistance?  Is it the uncertainty of what happens next, a desire to continue with a preferred activity, avoidance of an activity he doesn’t like, or an attempt to gain attention or control?

Make Transitions Manageable

Regardless of the behavior’s purpose, it’s generally helpful to make transitions as motivating and easy as possible. Try to set up the schedule so that difficult transitions are followed by somewhat desirable activities. For example, you would not want to follow a particularly difficult transition, such as coming in from recess, with a less favored activity such as seatwork. An easier transition would be to have the student come in and eat a snack, and then, with the student already seated, present the worksheet.

How you arrange the environment can make a difference as well. Arrange furniture to provide a clear, unobstructed pathway to the next activity, keeping distractions at a minimum. Favored items, such as toys or computers, should be kept away from transition pathways. Visuals, such as taping a line or arrows on the floor, can also be used to point the child to the next activity.

The use of schedules and transition cues are invaluable tools to let the child know what happens next and what is expected. However, the child needs to understand the visuals for these to be effective.  Does she understand symbols, or does she need realistic photos or real objects? It’s easy to assume the child knows what the little picture represents when she may not. Use an informal assessment (Crissey 2009, pp. 96–99) to assess what the child understands.

Knowing which activity comes next does not guarantee that the child knows how to transition (i.e., walking back to the room and sitting at the table). Strategies that can be used to clarify expectations include taking photos of the child transitioning, using Social Stories™, making a list of steps, or video modeling.

Reinforce Transitions

Transitioning appropriately is a behavior and a skill.  Like other behaviors, transitioning needs to be reinforced. This may require more than verbal praise. The key is to find what motivates the child. The use of checklists and a reinforcer assessment can help expand the list of items and activities that interest the child (Crissey 2009, pp. 33–62).

There’s an art to using reinforcement effectively. In the beginning reinforcers need to be given immediately. The most powerful rewards should be used with the most difficult transitions. For example, a child receives ten minutes of computer time for transitioning in appropriately from the playground, versus one minute with a toy for an easier transition.

When the child does not transition appropriately, the natural consequence is that she does not receive the reinforcer.  The only way to receive the reward is to transition at the appropriate time. Praise the child as you give the reward, but if the child is not complying, keep your emotions neutral and give the child as little attention as possible.

It’s important to set a short time limit in which the child can transition and receive reinforcement. A pre-warning can be given ahead of time, which is not part of the time limit. This gives the child time to process what’s about to happen. However, once it’s time to transition, the child needs to comply in a timely manner. Too often what happens is the child resists, finally transitions, then receives praise and a reward. Or, after the child refuses to transition, she is offered a treat, which entices her to comply.  What the child has learned in both instances is that it pays to resist and delay.

Set a short, non-negotiable time limit and make it visual. For example, you could write the numbers one through five on a board, and erase one at a time until they are gone, count down with your fingers, or use a sand timer. If the child refuses to transition, she will have another opportunity with the next transition. If she eventually does transition, she could be mildly praised for finally doing the right thing but not given the reinforcer.

Provide Opportunities to Practice

Few behaviors change immediately. The child’s behavior has been serving a purpose; it will take time for the child to understand that we are now doing things differently. Take time to talk about transitioning, model transitions, and use visuals or video modeling. Then take time to practice (i.e., walk out to the playground, take a five-minute recess, come back in, receive a reward). Those who transition appropriately get to immediately go outside again.

Setting up stations within the classroom is another way to practice transitions and establish the habit of responding to a visual transition cue. Set up several color-coded stations, each with a fun activity, and show them to the children. Then each child is assigned to a station, and a timer is set for a short period of time. When the timer goes off, each child is handed a color-coded ticket to go to the next station.  Children can usually be motivated to move on to the next fun thing, and this activity helps establish transitioning as a routine.

Finally, it’s important to keep in mind that the ability to successfully transition is a vitally important skill. We sometimes gloss over behavior challenges in trying to meet academic goals. Yet behavioral issues, such as difficulties with transitions, will greatly limit the child’s ability to integrate and take full advantage of educational and leisure opportunities.  Transition issues need to be addressed head-on in the child’s early years to allow the child to be fully engaged and ready for the challenges he will face throughout his school years and beyond.

 

BIO

Pat Crissey has worked as a teacher and autism specialist for many years, and has written numerous autism-related educational materials.

 

Reference

Crissey, P. 2009. Teaching Communication Skills to Children with Autism.Verona,WI: Attainment Company.

 

Copyright © Autism Asperger’s Digest. 2012. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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Transitioning to Adulthood

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“Building this time frame into one’s perspective is crucial to maintaining the motivation to do all the things necessary to eventually reach one’s goals. Dealing with some rejection is often part of the territory of transitioning.”

What a simple topic (that’s sarcasm). It’s like asking “How to prepare for everything!” or at least, “How to have a good quality of life. “ Without too much philosophical reflection, let’s just say this has something to do with reaching personal goals (typically related to career or personal life) and having choices about where you work, play and reside. To accomplish this, one needs to have goals or dreams in the first place, skills and supports to reach them, and opportunities to use those skills.

Where Do Dreams Come From?

Many kids growing up with Individualized Education Programs (IEPs) have had challenging academic and social experiences without always receiving enough support. When this happens too many times, kids and parents become depressed, and dreams of a positive future fade. A starting point with high school students (and I would argue much earlier), is to build HOPE.

This starts with self-awareness of a long list of strengths and a short list of challenges for which one may need some support or training. Strengths are the things that take us places. Though it is important to be realistic, it is equally important to think big! One of my clients was very artistic and became a cake decorator and art instructor to school children. Another loved music and got a job in a music store. Yet another had a love for chemistry and pursued a master’s degree, eventually landing work in the pharmaceutical industry. All these clients had challenges too; however challenges were not issues that had to be overcome, just remedied to the point where they no longer interfered with strengths.

Supports and Skills Training for Challenging Behaviors and Social Behaviors

Often it is disruptive behavior that stands in the way of success in school, college, work or other settings. Understanding the triggers to those challenges can help us avoid escalating punishment for poor behavior and, instead, design effective prevention plans to 1) modify those triggers and 2) teach skills to handle them better (see No More Meltdowns, Baker, 2008). For example, one of my clients had a habit of saying provocative remarks in school and work settings as he saw how some peers responded positively with laughter. We taught him to be sensitive to his audience in order to learn in which settings he could make provocative jokes and in which they would backfire, resulting in losing a job. With instruction and cuing before work, he was able to contain these behaviors to the appropriate setting.

Another key support is help managing anxiety. Often our clients learn needed skills to pursue careers and social events, yet fear of failure holds them back. It is crucial to help them gradually face feared situations by challenging negativistic thinking and learning ways to lower anxiety through exercise, meditation and sometimes medications (see Overcoming Anxiety, Baker, 2015).

Opportunities

We can often prepare individuals with autism for work and social events, yet often the more challenging task it to find and create those work and social opportunities. In schools and beyond, we often develop peer programs and social clubs around special interests. The Special Olympics, interest-based clubs, social skill groups, Friendship Circle, and similar organizations can provide social opportunities.

In the work world, we need to create more autism friendly businesses willing to hire our clients. Some government agencies can be of help, like state-run Divisions of Vocational Rehabilitation, which can provide job coaching as well as assistance getting a job. However, like most government supports, there are waiting lists and not everyone is considered eligible. Many of my clients have received more help from their family and friends’ personal network of business contacts who have been willing to hire someone with ASD. Many of our highly verbal folks on the spectrum have been able to attain employment through traditional methods—looking at online job postings and sending out resumes and cover letters. However, with many of my ASD clients, the next step—interviewing can be a stumbling block if not navigated carefully.

Interviewing and Disclosure

We can do many things to prepare for a successful interview, reviewing answers to anticipated questions, improving dress and appearance, and practicing non-verbal skills, such as eye contact. However, for some of our clients, behavioral differences may still prompt interviewers to think twice about hiring. Here is where disclosure about oneself can be a huge help. When interviewers understand why someone may behave differently, yet still be highly qualified for the job, they are more likely to hire. My clients may not always choose to disclose that they have an ASD, yet they may say something to explain perceived social issues. When they disclose, they always put a positive spin on it to make them an attractive employee. For example, one client explained that he has some mild social anxiety and thus he may not be great at chit chat and would prefer to just keep working diligently, making him a more productive employee.

Daily Living and Financial Supports

Parents should inquire about applying to the Division of Developmental Disabilities (DDD, see www.usa.gov/directory/federal/administration-on-developmental-disabilities.shtml) and the Social Security Administration. DDD may offer residential options, employment supports, and family and individual support to those who are eligible. Often these are provided at the state level. The social security administration can offer some financial support to eligible individuals with disabilities (supplemental social security income or SSI: see https://www.ssa.gov/disabilityssi/ssi.html) .

What Parents Can Do before Their Child Is 18

Parents may want to assess whether getting guardianship or power of attorney will be useful in order to be able to continue to help their child navigate medical, financial, educational, and other legal systems. Without this, parents may not be able to access information for their post 18-year-old adult child. In addition, parents may want to put any savings for their child in a trust fund rather than giving the money directly to the child. In order to be eligible for DDD services, children need to be eligible for Medicaid and show few if any assets. During high school, parents can help their school develop an appropriate transition plan that includes the following components:

9th grade: Students develop self-awareness of their assets and challenges. They learn information about their disability, needed modifications or training, and talents and interests.

10th grade: Based on their self-awareness, students learn to be self-advocates. They learn to express their interests and preferences, to develop their own goals, participate in their IEP and eventually run their IEP meetings, and educate others about their disability. (Editor’s note: Also see the self-advocacy article in this issue.)

11th grade and on: By their junior year, students begin career assessments to determine their career interests and match their strengths to career goals. A crucial component of this is the development of appropriate internship experiences to try out different employment/career options. This allows for what the law above describes as a “functional vocational assessment,” which is an ongoing assessment of the skills needed to perform while in a particular work environment. By actually working in a real work environment, it is possible to assess what skills the student still needs to learn and to have real opportunities to generalize those new skills in the actual work setting. To this end, frequent feedback from employers and supervisors is crucial to inform further targets for skill development. (From Preparing for Life, Baker 2005).

Putting in Perspective

Life after high school is most of someone’s life. Although some things, as I described above, should be done before 18 years old, things like finding a job, love, and a satisfying social life can take a much longer time. All too often my clients become disappointed when they leave school or college to find they do not have a job or a date in their first years out. This is not a sign of failure, and it is not abnormal. Building this time frame into one’s perspective is crucial to maintaining the motivation to do all the things necessary to eventually reach one’s goals. Dealing with some rejection is often part of the territory of transitioning. Even if there are 20 failed job interviews or disastrous dates, it still only takes one acceptance to get a job and one acceptance to find love or friendship.

References

Baker, J.E. (2015). Overcoming Anxiety in Children and Teens. Arlington, TX: Future Horizons, Inc.

Baker, J. E. (2008). No More Meltdowns. Arlington, TX: Future Horizons, Inc.

Baker, J. E. (2005). Preparing for Life: The Complete Guide to Transitioning to Adulthood for Those with Autism and Aspergers Syndrome. Arlington, TX: Future Horizons.

Jed is the director of the Social Skills Training Project, an organization serving individuals with autism and social communication problems. He writes, lectures, and provides training internationally on the topic of social skills training and managing challenging behaviors. Jed has authored eight award-winning books and is on the professional advisory board of Autism Today. He has also been featured on ABC World News, Nightline, Fox News, the CBS Early Show, and the Discovery Health Channel.


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The Transition to Elementary School

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Best Practices in the Elementary Years

The Transition to Elementary School

By Jim Ball, EdD, BCBA-D

Autism Asperger’s Digest | January/February 2011

 

For the past year or so of this column we have been exploring the world of Early Intervention, federally defined as birth to age 3 services. As a whole, EI is very family focused and child directed in making sure skills are being built to the maximum extent possible to ready the child for moving into public school. We’ve addressed topics ranging from RTI to critical life skills, milestones to meltdowns. Readers acquired a firm foundation of knowledge about ways to help their children during the early years, and hopefully, this inspired you to see the endless possibilities that exist in your children. You learned that over and above the services, parents are truly the driving force in the education of their child, no matter where that child falls on the autism spectrum.

This year, it’s time to move on to the next stage of your child’s development, the transition into public school, and for the purposes of this column, the elementary years from ages 3-9. It’s a whopping change that catches many parents off guard, leaving them scratching their heads and saying, “Whaaaat???” You need to be prepared and understand the shift in focus, and know how to deal with it best. And, that’s what we’ll do over the next six columns. We’ll explore what this transition entails, how to pick the best type of programs for your child, and how you’ll want to look at your child from a whole new perspective than you did during the EI years. Let’s get started!

Federal legislation defines the school years as ages 3-21. That means that once your child celebrates his or her third birthday, the child ages out of EI services and programs, and the responsibility for the child’s education falls to your local public school system. And with that shift of just one day, the world as you know it can change, often dramatically. Does your child magically change? Of course not! Your son or daughter won’t recognize this shift in who does what, and how, and how often (at least, at first he won’t notice) but you certainly will! If you both are to be successful as you learn to navigate this changing landscape, you need to prepare yourself and your child.

Just how is public school different from the Early Intervention system? Some of the differences are obvious and some are nebulous. Some differences are purposeful and others arise when the public school program falls short of its intended mission and structure. Among the differences you might notice are these:

  • A shift in focus from services that address the family/family needs to services only for the child.
  • A shift in the location of services, from at home or natural settings to classroom-based services.
  • Teachers replace parents as the child’s primary learning guide.
  • Parents no longer qualify for direct training on issues related to the child’s behavior, communication, social skills, sensory needs, etc.
  • Related services are reduced to those that mainly impact the child’s education; services such as respite care, family/individual therapy, daily self-help skills are no longer provided as part of the program.
  • Unless the child has an aide, teaching shifts to group settings, with reduced one-on-one attention given to the child.
  • A shift in the teacher’s expectations of the child. Children entering public school programs, even preschool programs, are expected to have a basic skill set, know how to play with others, follow the teacher’s directions, say please and thank you, act appropriately in a group, be able to pay attention, stay seated, etc. Teachers do not expect that “regular classroom instruction” includes individualized attention in helping the child acquire these skills. They expect them to already be there in the child.

This may look and feel a lot different from the family-centered, child-focused environment that was Early Intervention. And it is! This is your new reality, and you need to prepare yourself for this transition. How? First, you start by making sure you know your child well: what are his strengths? How does he learn best? Where, and to what extent, does she lag behind her peers in communication, social skills, basic skills? Are there behavior challenges that may affect his ability to fit in and learn within a group environment? Second, you do your homework and become educated about the federal legislation that governs this part of the child’s education. You learn, through research and a lot of conversation with the school and especially, with other parents, what options exist for educating your child, what services exist to help remediate the weaknesses, and what the “best practices” are when it comes to kids with ASD. Third, you acquire new personal and professional skills that will help you be an effective member of the team that designs the education program for your child. You learn to really listen, to clearly describe your child and his needs, to be open to the opinions and knowledge base of others. You learn to bite your tongue and put aside your emotions or be vocal and forceful, as each situation dictates. You learn the art of negotiation, and acknowledge – and accept – that every team member comes to the table with preconceived ideas that may need adjustment at times – including those you hold within yourself. Sounds like a tall undertaking, doesn’t it? I won’t sugarcoat it – yes, this is one of those significant transition periods for both you and your child, one that asks parents to “get down with it.”

Right from the start, your mindsets will be different, despite the fact that you and the school are equal partners in this process. Federal and state legislation puts the onus on schools to provide for the education of the child. Parents want what’s best for their individual child while schools are obligated to provide an education according to guidelines written for the majority of children.  Parents focus on one child; schools are responsible for all. These differing mindsets will clash at times.

Throughout this process it behooves parents to remember that they are a mighty force in securing the best possible education for their child. You know your child best, and need to be her strongest advocate. And, whether you come to this transition kicking and screaming, or with solid “group dynamic skills”, please hear this: the ultimate success of this transition from EI to public school, and the type of program your child ends up in, is largely up to you. It’s not just what you do during this transition that matters. More importantly, it is how you do it that will result in you securing the program you want for your child, or end up acquiescing to something that doesn’t meet your child’s needs.

I can’t impress upon you enough that you need to be prepared and act intelligently though this transition. Bring the skill set you (hopefully) learned during the Early Intervention phase of your child’s life, and apply it throughout this transition to public school programs and services. Always keep in mind your child’s strengths and challenges, his learning style, her basic personality outside the autism. This transition is just the next step in the journey… there will be others. And, we’ll be here to help you walk through them all, with information and strategies that keep you firmly on the road to success for your child, yourself, and your family.

BIO

Jim Ball has been working in the field of autism for 20+ years helping children, teens, and adults with ASD. Learn more about Jim’s consulting services at www.jbautismconsulting.com.

Copyright © Autism Asperger’s Digest. 2009. All Rights Reserved. Distribution via print means prohibited without written permission of publisher.


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Too Much Manganese?

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For well over ten years, Shauna K. Young, Ph.D., CTN, has conducted specific studies on the negative effects of excess manganese on the human neurological and sensory input systems. The clinical research on the possible symptomatic connections to autism and other neurological, learning, and behavioral disorders is known as “Spectrum Balance Protocol.”

Dr. Young serves as the Chief Medical Advisor for the NoHarm Foundation (www.noharmfoundation. org), a not-for-profit organization formed with the primary goal of releasing this information. Hopefully, the published studies will trigger more research and eventually provide help for children and adults on the spectrum. The information in the book does not “erase” autism; however, it does explain what causes many ASDs, how to use the diet effectively, and the specific foods used in the diet itself.

The following excerpt is just one of the 26 true case studies included in Erasing Autism: The Spectrum Balance Protocol.

Ground Zero: Jay’s Story

June 15, 2005 was a Wednesday much like any other, or so I thought. That afternoon, a harassed mom brought in her three-year-old son with the ill-defined hope that I could do “something” to help him. Eight months earlier, he had received the diagnosis, or sentence as it felt to her, of “autism” and in keeping with the current paradigm of “no known cause, no known treatment, no known cure” had been given no hope of making any significant changes for him.

This was the first autistic child I had ever worked with, and it was certainly an experience I will never forget. Even with his mother constantly chasing after him he was still making a wreck of my office, charging around, touching and smelling everything, making odd screeching sounds, and even taking a bite out of one of my plants!

In the course of the assessment process, in which I used a non-invasive type of bio-resonant/ bio-feedback computer interfaced equipment, one word kept popping up repeatedly —manganese. I didn’t give it much thought the first few times it showed up, since mineral, enzyme and other nutrient names often cross the screen. After repeating itself several times however, I wrote it down with a question mark as a note on Jay’s test sheet.

Normally, manganese is one of those nutrients you don’t have to give a lot of thought to, as the body usually maintains it on its own. Generally, there will only be a mere 12-20 mg stored in the body at any given time. Manganese is a type of naturally occurring metal that is found in several different kinds of rocks. Referred to as the “brain mineral,” it is important to the utilization of all the mental capacities and functions, as well as in the formation of tendons and ligaments, and in maintaining the structural integrity of the lining of various organs. Obviously, the “brain mineral” idea caught my attention, but strangely, the signs of manganese deficiency, such as, carpal tunnel, deafness, tendon weakness and retarded growth rate did not seem to apply. Huh.

After the family left my office, the word “manganese” continued to distract me. Enough so that after office hours I pulled out Jay’s chart and went over it again and again. Something was bothering me; I just couldn’t put my finger on what it was. I looked for the small things in his chart that sometimes get overlooked in the hectic confines of a first appointment, especially with a kid charging around eating my plants.

When I asked if he had any allergies, his mother said that he did not, but noted that, “He throws up soy and blueberries.” Looking up soy and blueberries in a nutritional handbook, I found they are both excellent sources…of manganese. Further investigation revealed that manganese excess is known to inhibit iron absorption, and Jay had exhibited many low-iron symptoms. It was all starting to make sense. This wasn’t a manganese deficiency. This was a manganese surplus!

Armed with nutritional handbooks, I began searching for problems associated with manganese excess, but I found very little information. Next I turned to the Internet and after a few preliminary searches found something very interesting. There were several articles that addressed a condition called “Manganese Madness.” According to numerous studies I located, the primary site of collection for manganese toxicity, regardless of the source of exposure, is the basal ganglia; a mass of nervous tissue within the cerebral hemispheres. This cause-and-effect of excess manganese was first revealed by an English physician who noted in 1837 that some workers in a local manganese mine appeared “lethargic and their faces unexpressive.” Since neurological textbooks identify manganese as a neurotoxic metal, and as a result of his research, the disease of “Manganism” was coined by the turn of the 20th century.

There wasn’t much information to be found, but according to what I could find on “Manganism,” this disease that struck manganese miners exposed to toxic dust appeared to cause symptoms of “emotional liability, irrationality, hallucinations and impulsivity.” Chronic exposure led to “muscular weakness, ataxia, tremor, immobile facial expressions, and extreme speech disturbances.” These symptoms, which sounded a lot like Parkinson’s in adults, sounded suspiciously like autism in a child to me. More digging revealed that other very common symptoms of manganese excess can be speech difficulties and extreme reactions to sensory input: light, touch, smell and sound. Aha! Now I was getting somewhere.

The more research I dug up, the more fascinating and clear it became to me: this was a manganese excess, not a lack, that might be behind Jay’s symptoms. Every report I could find described it perfectly! Something that might be encountered as “problems in speech” to an adult could well be perceived as an insurmountable obstacle to a child barely more than a year old. And his most important symptom, the overwhelming nature of his sensory input, was described in detail in each and every report. Limiting and annoying to an adult, I could see how terrifying it would be to such a little child.

The one thing my research did not reveal anything about was how to correct this excess. Could there be a way to somehow counter the manganese imbalance and thereby halt these disastrous effects? My hunting through medical research papers revealed no information on the topic. Given the complete lack of guidance or suggestions, I fell back on my number one tool—my common sense. If excess manganese can inhibit iron absorption, it made perfect sense to me that additional iron could possibly defeat and balance the excess manganese. It was worth a shot!

After running a quick check of the readily available foods that are highest in iron, I made the rash decision to call his mother. She was rather surprised to hear from me, especially since it was around 9:00 pm, and I desperately hoped she wasn’t going to think I was completely crazy for suggesting what I was about to tell her. I described the course I’d followed on this, and the results of the research I’d done. Then I told her my wild idea: maybe if we loaded Jay up with dietary iron it could possibly work to overload the manganese and possibly restore the balance, which hopefully could reduce some of the sensory overload symptoms. Things got pretty quiet for a moment while she considered what I was saying, and I held my breath hoping she’d agree to try it.

Her first question concerned how to get all the iron into him. Exhaling, I suggested a short list of high iron foods, and reminded her to load his diet as much as she could with good fats; especially olive oil and butter. Her worry, which I would begin hearing constantly from this point on, was whether he would willingly eat these foods I suggested. “Don’t all kids hate spinach?” We discussed a few food ideas and she assured me that she’d do her best, as by now she was growing a little excited by this crazy idea herself. I further suggested that she let him play with his food, eat with his hands, whatever it took. I concluded the call by asking that she keep me in the loop about his progress.

When I hung up the phone, I looked once more at what I had written in Jay’s chart. One little notation, “manganese,” followed by a question mark. I had no idea at the time that that one little word notation would change so many lives, including mine.

Ten days after his original appointment, nine days on the high-iron protocol, Jay’s mom called me to give me a progress report. To her surprise, he was absolutely loving the diet. She described him as “eating like a horse” and happily scarfing down all the veggies and iron-rich foods I had recommended. Once a picky eater, he was now looking forward to mealtimes. As I had suggested, she was letting him play with his food, eat with his hands, whatever, as long as he ate it. In something that seemed strange at that moment, that would actually come to be a norm in time, he was consuming raw spinach with gusto, even carrying the bag around and eating it with both hands “like potato chips.” I asked if anything in his behavior had changed, and she gave her report. Already, in only nine days, he was slightly less sensitive to light and touch, and had stopped smelling everything “like a puppy dog.”

Throughout our entire conversation, there was an undertone of … something. She sounded excited, which I could understand, but there was something else. Finally I asked, “Is there something else? Any other changes?”

This was the question she was waiting for and sprung her news on me. “Just one—he started to talk!”

As amazing as this was, it was only the beginning …


 

Shauna Young is the Medical Director of the Assertive Wellness Center of Durango, CO. She was awarded a Ph.D. in Natural Sciences from the University of Natural Medicine in Santa Fe, NM. Her research and doctoral thesis are dedicated to finding dietary connections in both the formation and reversal of autism spectrum disorders. Erasing Autism: The Spectrum Balance Protocol is her second book.


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Comments

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“What Would He Have Told Me If He Could Have?”

Home  /  Behavior  /  Current Page

By Ellen Notbohm

Autism Asperger’s Digest  November/December 2014

Three little words: behavior is communication. This poignant illustration, coming to me in the form of a question from a teacher, gets to the heart of what happens when a child with autism cannot communicate his needs.

I teach children who have autism. So I often wish I could get inside their heads to know what’s motivating them. Each is so individual in their likes and dislikes. The aggression toward staff and students of one boy I taught was so hard to manage. I feel like I failed him, his family and his classmates by not being able to establish a safe place for him to learn. What do you think he would have told me if he could have?

All humans—all creatures—need a functional means of communication. In our culture, we’ve designated speech as the gold standard of interpersonal communication. Parents of nonverbal or minimally verbal children are often consumed with the urgency of teaching their child to talk. This emphasis on “using our words” is so prevalent that when children with under-developed language skills reach out to us nonverbally, we may miss their attempts to connect. Nearly all children with autism need some form of adaptive communication. When we fail to give a child a functional, meaningful means of communication, his needs and wants go unmet and he finds a way to communicate by whatever means he can. This is what your student was telling everyone around him, loud and clear—that he wasn’t able to express his needs and wants in the manner expected by the adults around him, and that he had not been taught an alternate form of functional communication. He was forced to resort to the only other means he had—his behavior.

Our insistence that our children “use their words” should be only the starting point for our recognizing their efforts to communicate, because words are only a small part of all that comprises interpersonal communication. We communicate through the nuance of language (sarcasm, innuendo), through the inflection, pitch and speed of our speech. We communicate through body language, facial expressions, emotional responses, postures and gestures. We communicate through proxemics, allowing some people to come near to us while keeping our distance from others, engaging in or avoiding physical contact and/or eye contact.

Most typically-developing children communicate easily using eye contact, body posture, pointing, but many kids with autism have difficulty indicating interest. They often lack the social thinking skills to know what to reference. Their motor systems can’t plan, coordinate and execute in a way that produces a spontaneous gaze or gesture. We must look farther than the child’s movements or words to be able to hear his needs, thoughts, feelings and longing to communicate.

All behavior is communication, and all behavior has a source. As adults, we often fail to seek out that root cause, perhaps assuming that the child could change this behavior if he wanted to, perhaps trying to squash the behavior without identifying the underlying reason for it. Quelling troubling behavior begins with understanding that the child is giving us information about sensory, language, social and emotional factors in his environment that are affecting his ability to cope. He is telling us that his so-called negative behavior is preventable, but only if we’re willing to root out and address the cause. And we must acknowledge that our own behavior is information we impart to the child about his environment. We can’t question what his behavior is telling us without also questioning what our behavior is telling him.

Our job is to break down this complex landscape of interaction into parts manageable enough to give the child with autism a meaningful and functional communication system, in whatever form it may take. When I speak at conferences, I put my audience through an exercise simulating what it might be like to lose their own functional means of communication. We envision beginning our day by having our mouths taped shut and our fingers taped together. No phone, no email, no texting, no Facebook or Twitter. No functional communication as they know it. Then I ask them to imagine going about their day, their jobs, their responsibilities, confronting the expectations of those around them. They must ask themselves:

How effective would I be?

How successful would I be?

How would my co-workers or family members react?

How much could I contribute?

How long before my frustration, anxiety, anger, and fear forced me to exhibit some “behavior”? And what if it didn’t end at the end of the day? What if this was my life?

The room always gets very quiet at that point.

Spend some time today thinking about an undesirable behavior of your own, past or present. What need did or does it fill? Have you tried to extinguish the behavior? What did you try? How well did it work? Relate this to your efforts to change an undesirable behavior in your child or student, and you’ll have the beginnings of a new and meaningful understanding of him.

 

Editor’s Note: Originally published as a guest blog post for Positive Parenting Solutions, http://www.positiveparentingsolutions.com/. Portions of this response adapted from 1001 Great Ideas for Teaching and Raising Children with Autism or Asperger’s, revised and expanded edition by Ellen Notbohm and Veronica Zysk (2010, Future Horizons).

Bio: Ellen Notbohm is the author of one of the autism community’s most beloved books, Ten Things Every Child with Autism Wishes You Knew, and three other award-winning books. Her work inspires and delights millions worldwide in more than twenty languages. She contributes to numerous publications, websites, classrooms and conferences worldwide. www.ellennotbohm.com

 

Copyright © Autism Asperger’s Digest. 2014. All Rights Reserved. Any distribution, print or electronic, prohibited without permission of author.


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