The Affects of Autism in Families and in Partner Relationships

November 13, 2011

By Chantal Sicile-Kira, BA

Editorial Note: This article originally appeared in Family Therapy Magazine in May/June 2008

Family life  is all about relationships and communication:  relationships between two people in love, parents and children, siblings, extended family members. Yet, autism spectrum disorders (ASDs) are all about  communication challenges, misunderstanding of social cues, and lack of emotional understanding,  thus affecting every relationship in the family. In marriage, if one of the partners is on the spectrum, there will be more difficulties than the usual marital conflicts. Sibling issues are exacerbated  by having an autistic sibling and/or a parent on the spectrum. Communication and social challenges  can also impact the adult’s work situation. Before looking at how to best provide support, a better understanding of the particular difficulties autism infuses into the family unit is necessary.

Autism: It’s a Family Thing

It has been estimated that the divorce rate is in the 80% range  in families with children who have autism (Bolman, 2006).   Despite high rates of marital conflict, many couples do not reach out for  couples therapy.  Lack of respite is a major reason.  For most, finding  a babysitter with whom then can safely  leave  an autistic  child who has  toileting issues, little communication skills, aggression and other inappropriate behaviors on a regular basis is difficult (Sicile-Kira, 2004). Another reason is their lack of belief that they will find a therapist understanding of their particular circumstance and offer any true guidance, thus preferring to use the precious  time away from the child to confide in a good friend.

Marital stress around the child usually  starts when one or both of the parents realizes the child is not developing properly. Couples who have a child who  does not seek their attention in the usual  way  (i.e.,  eye contact, reaching out  for or giving of  affection, searching them for comfort when hurt) find it  hard   not to  feel rejected or unimportant to the child. For those whose child develops normally and then regresses around 18-24 months, there is the added loss of  the child they knew slipping away. Consider also that a couple looks forward to having a child, and each person had his idea of what the expected child will be like.  When the child does not match the expectation,  or regresses, there is a loss and anguish felt by the parent not unlike the stages of grief that people who  lose a loved one experience (Sicile-Kira, 2004).

Other stages of added stress are: getting a diagnosis (family physicians are reluctant to make a diagnosis on a condition once rare for which they have no set treatment plan to prescribe); getting services (a constant struggle); dealing with adolescence (sexual development appears, uncontrolled tantrums can be dangerous as the teen gets bigger); and post high school (the realization that few adult services are available) (Sicile-Kira, 2006).

Keeping  any marriage healthy takes  time, and all too often,  time  gets swallowed up by the autistic child’s needs.  Many children with an ASD   have difficulty  sleeping, meaning that at least one of the parents is sleep deprived. Usually, a role division takes place as one parent, usually mom,  becomes the  autism expert,  while dad works harder to earn money or opts out. Differences of opinion exasperate an already difficult situation – how much time, energy and money is to be spent on helping the child is based on personal philosophy, and in this the couple may clash.   Over time, dad becomes frustrated at the demands of their wives to interact or play with a child who does not know how, and moms become frustrated at the lack of involvements of their partners.

As well, a common pattern among moms is to wonder what they did wrong – drinking or taking medications  during pregnancy, exercising too much, allowing the child to be vaccinated, thus adding  feelings of guilt to an already stressful situation. Also, the couple eventually feels  isolated because they feel it is hard to take an autistic child to people’s homes and are uncomfortable inviting people over.

Sometimes the couple becomes closer than ever, bonded in their shared circumstances. Unfortunately, usually the stress of dealing with autism and all it entails – the constant and necessary advocacy at school, the fighting for services and supports, the added financial burden, trying to handle behaviors and meltdowns at home – becomes a  wedge pushing the spouses  further and further apart. Overwhelmed, stressed and exhausted, the couple’s communication becomes  impaired and even autistic-like, lacking emotion and reciprocity.  This can affect other children in the family.

Grandparents

Unlike the parents who are totally focused on the autistic child’s needs, grandparents are concerned about the effects of autism on their adult children (the parents), other grandchildren and future generations.  They also suffer stress similar to that of parents and siblings. Grandparents  are concerned about the difficult situations they see their own children experiencing. They may provide the autistic child’s parents (who may be depressed, single, or divorced) with necessary support in the way of childcare, financial support and advocacy. But, they may also contribute to stress because of conflict regarding behavioral symptoms and treatment (Hillman, J. 2007). Sometimes grandparents  get involved in the blame-game about the possible causes of the child’s autism, which can be particularly terrible if the couple splits up and there are disputes over custody.

Grandparents may want to help by babysitting, but most do not have the training in behavior management or may not have the physical strength  required to handle behavioral episodes. They may just want to play with the child and spoil him/her, and end up feeling rejected  by the lack of ‘typical’ exchange.

Siblings

The challenges of having a brother or sister on the spectrum can have both  positive and a negative effects on  a sibling. The factors that affect how a sibling adjusts include: family size, severity of the brother or sister’s impairment, age of the sibling at the time of the diagnosis, gender and age of sibling, and their place in the birth order.  The parents’ attitudes and expectations have a strong bearing on how a sibling adjusts.

Many siblings develop a maturity  and sense of responsibility greater than that of their peers, take pride in the accomplishments of their brother and sister and develop a strong sense of loyalty. Siblings of ASD children are usually more tolerant of differences in people and show compassion of others with special needs. However, many siblings feel resentment  at the extra attention the child with autism receives, and some feel guilt over their good health. When little, they may think  they can ‘catch’ autism from their sibling. They may also feel saddled with what they perceive as parental expectations for them to be high achievers. Many feel anxiety about how to interact with their brother or sister, and feel rejected by the lack of reciprocality. Often there is a feeling of resentment at having to take on extra household chores, coupled with restrictions in social activities. When one of the parents has AS, this creates another set of challenges.

An Asperger Marriage

As Asperger’s Syndrome (AS) has only been recognized since 1994, there are many adults with AS who have been misdiagnosed and treated for  mental illness. Although traditionally 3 out of 4 children diagnosed with an ASD are male, there is growing consensus that there may actually be more  females with Asperger’s Syndrome who have been  misdiagnosed with other conditions. Keep in mind that the information below is  based on  heterosexual partnerships,  although  same- gender relationships occur just as it does in the population as large.

Sometimes the diagnosis of an adult follows  that  of  their child, sometimes it follows marriage therapy, and sometimes it is problems at work that  finally lead to a diagnosis. A spouse  may seek out a therapist  with complaints of  a cold, uncaring,  and unemotional husband, although she may have chosen her mate because he appeared  calm and reliable. An AS adult may appear depressed because of  the flat affect, monotone and lack of direct eye contact.  Others may appear controlling and rigid, insisting everyone in the household stick to the same schedule and participate in the same activities, due to a need for sameness and inability to empathize. It is this lack of  empathy that has the biggest impact on the partner with AS ability to understand their spouses, as well as any children,  and to recognize that their needs, perceptions and thoughts are different from their own (Aston, M. 2005).  Poor empathy in the AS parent may contribute to behavioral and psychological problem in the children. However,  a parent with AS, may be better able to better understand and cope with the a child who has the same diagnosis.

Anxiety and stress can run high in adults with Asperger’s due to the difficulties in communication and social interaction. Most lack what we think of as ‘common sense.’ Body language and subtexts of intonations are lost on them, so that they may hear the words that were spoken, but not understood the real message or context. Persons on the spectrum can be honest to a fault and  may make inappropriate comments in public, thus appearing rude and uninterested in social situations.

These same communication problems effect a person’s ability to keep a job or move up the corporate ladder. Temple Grandin PhD, author of Thinking in Pictures and animal scientist, often speaks about how she almost got fired from her first important job because she kept writing letters to the CEO telling him how he could improve the company. She had no clue that the hierarchy at work dictated how, what, and to whom you communicate. Often times when a company is downsizing, the people laid off are the those who did not establish social relationships at work.

Physical demonstrations of affection can be difficult  for those  adults who  suffer from sensory processing disorder  and are overly sensitive to touch. Often the AS spouse is surprised that his partner and  children are feeling unloved and unsupported, not realizing that his behavior does not show the support and love he says he has for them.  The inability to read non-verbal communication makes it difficult  to differentiate between when their partner  wants to have intercourse or just a snuggle.  Some couples report that the partner on the spectrum insists on routine even  in  sexual activity (Aston, M. 2003).

Finding out that a partner has an ASD can provoke different feelings. One of them is anger at missing out on aspects of a marriage that the partner was looking forward to. Another feeling is relief that the partner is not trying to shut the other one out, he is just unable to provide the emotional response needed (Slater-Walker, C., and Slater-Walker, G. 2002). For children the reaction is similar. The positive aspects of having a spouse with Asperger’s can  include  the realization that they are in most cases loyal, honest and dependable.  Those who are diagnosed as adults who knew they were different feel empowered and relieved once they receive the diagnosis, as now they have a starting point for finding strategies that are helpful (Carley, M. 2008).

How  Therapists Can Help

There many ways in which therapists can help the family unit. For all those who need more information or need access to a support group and are not yet hooked into recourses, the Autism Society of America has local chapters that can be helpful. www.autism–society.org

Couples need to be encouraged to acknowledge  and face the emotions of the grief cycle (i.e., denial, grief, depression, anger) and the loss of the child they were expecting, and to work through these emotions. Misdirected anger is often released at school personnel in Individualized Educational Program (IEP) meetings or taken out on service providers, thus alienating the very people who are there to help them.

Encouraging couples to regularly schedule time together without the children is important. However, this suggestion is useless  unless the therapist can support  them in devising  a practical plan for  finding the respite help they need.

The lack of qualified babysitters can be a very real obstacle to finding  time together or continuing therapy. Working on good communication skills and  looking at how they can support each other is important. The couple  needs to realize and accept that their partner may react differently to having an autistic child and a different viewpoint when it comes to how much effort and money to put into treatment, as well as what kinds of treatments to pursue.

Encouraging dads to  take a more active role  with agreed upon treatments, generalizing some of the skills the child has learned through his ABA (Applied Behavioral Analysis) program, helping with structure, limit setting and discipline can be very helpful. For this to occur, dad needs more information and training. Perhaps coming up with some dad-oriented informational materials could be useful. A good on-line support group for dads is  http://www.fathersnetwork.org/

In the same way, providing available and willing grandparents with information and a little training that can enable them to step in and give the parents a few hours of respite can be beneficial to all involved. Explaining to them why their grandchild acts they way they do (i.e., sensitivity to sound and light, not being able to make sense of the world, lack of communication skills) is helpful.  Suggesting they  offer to  do a specific task, such as  teaching the child to catch and return a ball or play a simple game, or  teach a simple learning skill which needs much repetition and positive reinforcement, can be helpful. In this way they could  understand both the effort needed and the excitement to be had in teaching their grandchild an interactive skill. Grandparents will feel empowered knowing they are making a positive difference in the family’s life, the parents will feel supported and more relaxed. Information geared towards grandparents can be found on the  Grandparent Autism Network  at http://www.ganinfo.org/organization.aspx

To the non-autistic sibling, knowing that they can ask questions and discuss their feelings about their sibling and autism is important. By helping parents understand the needs that siblings have is helpful,  as sometimes these get lost in the shuffle. The non-autistic children need some quality time   alone with their parents on a regular basis Parents need of be aware of the sibling’s feelings in order to develop strategies of support  to help him/her  adapt.

Providing the siblings with information about autism  (such as why their sibling acts they way he does)  in a positive manner at their age level is necessary, and there are many children’s books available now that that can be very helpful. Joining a support group for other siblings of special needs children can be extremely helpful so they do not feel they are the only ones going though this, see www.siblingsupport.org/sibshops for more information.

The siblings need to be reminded often that they have just as much of their parents’  love as their autistic sibling, even  if  parents may need to give more time and attention to their brother or sister with autism. It is important that the non-autistic sibling have a private autism-free zone  to call their own, and a secure place to keep their precious objects. They also need to see that the sibling with ASD is given consequences if he wrecks their things, and that he is expected to improve his behaviors over time. For children of an AS parent,

For a mixed marriage between an  Asperger and a non-autistic partner  to work,  each spouse  needs to recognize the differences they have and  why. If the partner  with Asperger’s  refuses to  acknowledge that his behaviors and actions towards his/her partner are unacceptable, then  there is little hope for the relationship.

Understanding the deficits, reinforcing the strengths and  acknowledging the needs of each partner is helpful. Teaching the willing AS partner behaviors that are important to his spouse (such as greeting her  when he walks in the house, asking about the partner’s day at work, giving her a kiss) is effective. Research for my new book  (Autism Life Skills to be published by Penguin October 2008) indicates that those willing to learn can be taught expected behaviors and strategies. Some of these include teaching them the ‘hidden curriculum’ (i.e., what non-autistics automatically learn and take for granted, making lists for visual learners).  For more social competence at work, having a mentor there who can explain the non-autistic expectations, and writing a list or drawing a map of the hierarchy and expected communications at each level can be well-worth the effort. GRASP – The Global and Regional Asperger Syndrome is a good on-line network for people on the spectrum www.grasp.org  Information for  partners and families can be found on these two websites : Asperger Syndrome  Partners & Individuals, Resources, Encouragement and Support. www.aspires-relationships.com ; Families of Adults Affected by Asperger’s Syndome wwww.faaas.org.

Author Biography

Chantal Sicle-Kira, BA is President of  Autism Making A Difference,Inc. which provides consultation, training and seminars on ASDs. She is the author of Autism Spectrum Disorders (2005 ASA Outstanding Book of the Year), and Adolescents on the Autism Spectrum Disorder, both published by Penguin. Her third book Autism Life Skills will be published Oct 2008.

 References

Aston, M. 2003. Aspergers in Love: Couple Relationships and Family Affairs. London: Jessica Kingsley Publishers.

Aston, M. 2005  “Growing up in an Asperger Family.” Counseling Children and Young People (CCYP) Journal.

Autism Society of America, 2008. “Family Life.” http://www.autism-society.org

Bolman, W. 2006. “The Autistic Family Life Cycle: Family Stress and Divorce.”  asa.confex.com/asa/2006/techprogram/s1940.htm.

Carley, M. 2008 Asperger’s from the Inside and Out: A Supportive and Practical Guide for Anyone with Asperger’s Syndrome. New York: Perigee.

Hillman, J. 2007. “Grandparents of Children with Autism: A Review with Recommendations for Education, Practice, and Policy.” Educational Gerontology, P 513-527.

Sicile-Kira, C. 2006. Adolescents on the Autism Spectrum: A Parent’s Guide to the Cognitive, Social, Physical and Transition Needs of Teenagers with Autism Spectrum Disorders. New York: Perigee.

Sicile-Kira, C. 2004. Autism Spectrum Disorders: The Complete Guide to Understanding Autism, Asperger’s Syndrome, Pervasive Developmental Disorder, and Other ASDs. New York: Perigee.

Slater-Walker, C., and Slater-Walker, G. 2002. An Asperger Marriage. London: Jessica Kingsley Publishers.

 

 

 

Preparing Your Teen or Young Adult for Work in the Real World

November 4, 2011
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“Jeremy does not like jobs with physical activities but likes to work with ideas and be able to tell others what to do…. As the case manager, I see Jeremy’s strong assets like working data, communicating with people to purchase/buy/manage a business. He is able to do gross motor activities, but often finds fine motor activities difficult and frustrating. Jeremy needs more opportunities exploring jobs and finding out what he would do to have fun and earn money. These last two ideas are very important to Jeremy.”

The above was part of information given to us by one of Jerey’s favorite teachers during an Individualized Education Program (IEP) meeting a few years back.

Jeremy is older now, but like all parents my husband and I worry about what his future will look like. Jeremy is now 22 years old, and with the economic situation being what it is, we are doubly concerned about the financial aspects of Jeremy’s life as an adult. But as the saying goes, worry gets you nowhere – fast. Preparing, planning and creative thinking is a better alternative to wringing our hands.

When thinking about employment for your child or student on the spectrum, there are a few aspects that need to be focused on: the life skills he or she needs to learn; a clear understanding of what employers look for in an employee; the interests and strengths of the person on the spectrum; the usefulness of mentors; and the different employment structures currently available. In this post, I’ll be discussing necessary life skills and what employers look for.

Necessary Life Skills

In my book, Autism Life Skills : From Communication and Safety to Self-Esteem and More – 10 Essential Abilities Every Child Needs and Deserves to Learn, the ten skill areas covered are important for all aspects of life, whether at work, at school, at home, or in the community. Some of the skills such as self-regulation, independence, social relationships, and self-advocacy are important for getting and keeping a job. The topic of earning a living is the last chapter in my book, because being able to get and hold a job is really a culmination of all the life skills hopefully learned during the school -age years, whether a person is on or off the spectrum. For example, for someone to be accepted in a workplace, he must be able to control his emotional and sensory meltdowns. A certain amount of independence is needed at most jobs. Understanding that you should speak to your boss differently than you would to a colleague is important to know in most work situations. Self advocacy skills are necessary in order to request what you need to get the job done.

Life skills in general should be broken down and translated into IEP goals and objectives, especially during middle school, high school and transition years. Obviously, everyone is different and the skill level reached for each of these skills is different depending on the person, but every student needs to learn a minimum in order to live and work in the community.

What Employers Look for When Hiring

Too often, when looking for a job placement for a person on the spectrum, people take the approach of asking for handout, or a favor. We need to approach this differently. I took a look at the top 10 skills and attributes most employers look for as identified by the Bureau of Labor (Job Outlook, 2003) and I discovered that many of those attributes are attributes people on the spectrum have, yet rarely do we sell those attributes to prospective employers. Here’s the top ten of what employers look for: honesty and integrity; a strong work ethic; analytical skills; computer skills; teamwork; time management and organizational skills; communication skills (oral and written); flexibility; interpersonal skills; motivation / initiative.

Now, many of you reading this are probably focusing on the skills in this list your child or student does not have. Look at it again, and think about what attributes your child does have. For example, most people on the spectrum are honest to a fault – they are usually the ones in the store saying “yes” when a woman trying on a dress says “Does this make me look fat?” They are not the employees who will be caught with thier hands in the cash tills. That’s a positive point to sell. A strong work ethic applies to most of our guys – the ones who do not like a change in routine and are going to be there rain or shine. They will not be calling in sick because they had one too many martinis the night before, or leave early because they have an event to attend. Analytical skills are really ‘obsessive attention to detail,’ and many of our children have that. The child who likes to line up blocks and trains probably has good organizational skills. Teamwork and flexibility are difficult areas for many, but we should be teaching flexibility at school (there are ways of doing that), and teamwork can be handled by ensuring the person on the spectrum has one person on the team that he is in contact with for all needed information. Many of our children with Asperger’s are good communicators, and some have become journalists, speechwriters and professors.

The point is, when people are selling a product and/ or service, they market the positive attributes, not the negatives. And that’s precisely what we need to be doing with any prospective employee on the spectrum.

In my next post, I’ll discuss the interests and strengths of the person on the spectrum, and the usefulness of mentors.

Employment on the Autism Spectrum

November 4, 2011

By Zosia Zaks, M.Ed., CRC

Introduction

I recently heard that 97% of adults on the autism spectrum in the United States are not working. I don’t have the source for this data. Even so, we all know that the rate is too high. Something is amiss.

I believe that all adults can work and need to work. Work is more than just earning money to survive. Adults want to do jobs that make them feel proud. Work is about contributing to society. Even if that contribution happens in an alternative format, this is how a person senses his or her dignity. Therefore, the autism community must urgently address this issue of severe unemployment and underemployment.

Vocational Rehabilitation: Sometimes a Good Option

Many disabled adults look for services and supports from the federal-state vocational rehabilitation system. Autistic adults can also avail themselves of what VR has to offer. VR is staffed by different types of professionals, including Certified Rehabilitation Counselors (CRCs) who are trained to provide a mix of counseling, education, skills supports, measurement of work strengths and weaknesses, and advocacy with employers.

Realize, though, that you must qualify for services from VR. Unlike special education, which is a right, you are not entitled to any supports or assistance in adulthood. At a minimum you will need a fresh diagnosis – a diagnosis from middle school or earlier is probably too old for the qualification process. Also keep in mind that each state calls VR something different: For example, In New York, VR is called Vocational and Educational Services for Individuals with Disabilities (VESID); in Maryland, it is the Division Of Rehabilitation Services (DORS); in Oregon, it is the Office of Vocational Rehabilitation Services (OVRS). States vary in what they offer and how you qualify. You can find out the name, phone number, offerings, and qualification procedures of your state’s VR office by looking at the state government website.

It is never too early or too late to contact your state’s VR office. You can call VR at any time in your life. Even if you are a teenager, you may qualify for testing services that can help you determine your work-related interests, talents, and assets. You may be able to participate in VR programs just for transitioning youth. Your state may have pre- vocational options, too, that let you “try out” different work environments or practice work skills before you graduate.

Keep in mind that the professionals in VR have varying degrees of familiarity with autism. If you have strong communication skills, or if you can live independently your need for support in the area of work may not be understood. You may qualify for a service that sounds perfect, such as a computer repair training program, only to discover that supports and accommodations for autism-related issues in the classroom are wholly lacking. You may qualify for VR funds to develop your own business, but if you need a lot of structure and guidance to get tasks done, self-employment may not be for you no matter how great your business plan is on paper. Creative alternatives for employment support and for finding jobs may be more viable for you.

Creative Supports

If you do not qualify for services from VR, or if the services VR has to offer don’t work for you, what else can you do?

Non-profit and private groups focused on autism are filling the gaps by providing ancillary social skills training, mentors, one-on-one behavior coaching, and longer-term employment supports. Before graduating high school, investigate opportunities and limitations of your state’s VR office, and then find out what is offered by autism-specific organizations in your geographic area. Remember to do this research early. You will need a lot of time to collect information, sort through what you discover, perhaps “test drive” certain supports, decide on the various options, and then actually complete application procedures. Non-profit and private groups have some method of determining eligibility for their programs and services, and you may encounter waiting lists.

If you are not finding the right mix of supports from either VR or autism organizations, then you will need to figure out what you can do on your own. It is possible to hire independent Certified Rehabilitation Counselors, social workers, or career counselors with specific training and expertise in autism for career testing, planning, and goal- setting. A number of families have marshaled a knowledgeable sibling or family friend to step in as a job coach. Parents themselves have approached employers to create work trials or to test-run accommodations. Allow yourselves to be as creative as possible. Just realize that finding, hiring, training, and deploying your own “support team” requires time, financial resources, networking, and diligent planning. Don’t wait until the week before high school or college graduation!

Alternative Paths to a Job

Frustrated by a lack of options or excruciating wait lists at VR and agencies serving autistic adults, some families and adults on the spectrum are finding other avenues to employment success.

Some families and adults on the spectrum find internships, volunteer opportunities, specialized positions, or extended “work trials” in businesses operated by compassionate relatives and friends. For example, maybe your parent’s college roommate would be willing to offer you an internship. Would a cousin let you observe and then try the different positions at his firm? Does your neighbor need someone to fix the computers in her warehouse? I bet she would be thrilled if you offered your services for free – she saves money, and you get experience. You or your parents might be lucky enough to network with a willing employer you’ve never met before, but just think for a moment how many workers your parents, relatives, family friends, and neighbors know. Almost all of us know at least 12 people in 12 different professions. And think of how many people these people know! If your networking skills are not great, this is where family and friends need to step in.

For those who require one-on-one support, tailored apprenticeships may be another alternative work possibility. An apprentice can rely on the journeyman to set priorities, organize job tasks, determine the pace of the work, and interface with customers or business-related contacts – instantly removing most social and executive functioning aspects of a job. Since the apprentice and the journeyman expect a relationship that involves at least some degree of guidance, it becomes natural for the journeyman to impart hidden curriculum wisdom. Apprenticeships can often be created for all sorts of jobs, not just union-based jobs typically associated with the apprentice/journeyman structure.

Some families have placed an adult child into self-employment if the individual works best alone or has a special talent or interest that lends itself to proprietorship or consulting. Self-employment ranges from managing a restaurant franchise to tuning pianos to adjunct teaching at a community college.

Many self-employed people, not just those on the autism spectrum, cobble together several “mini” jobs to equal full-time employment. For example, teaching college classes as an adjunct provides just enough external structure, allowing me to follow the rhythm and calendar of semesters. I also obtain all the benefits of university affiliation – such as library privileges so I can conduct research – without the political and social constraints of being a full-time faculty member. But part-time adjunct teaching isn’t a living, so I also see clients, train professionals, and write articles. My days vary, but I have maximum control over what I am doing and when.

Be sure you have the ability to initiate tasks, direct your own activities, and make decisions under pressure if you are going to consider self-employment. Too many people jump into self-employment without carefully assessing their abilities and strengths. On the flip side, too many people don’t give self-employment a chance. You may be able to find support for any areas of weakness. Some of us delegate to others those tasks we can’t do. You may also discover ways to “patch in” supports that extend your ability to make self-employment an option. For example, you can hire someone to do accounting or to handle business phone calls.

Self-employment should be seriously considered if an autistic adult needs strict control of the work environment or the daily schedule. In my case, I must be able to set up my work spaces to my specifications and I must be able to flexibly arrange what I do each day. I only came to understand this about myself after years of trial and error. If you have severe sensory issues, severe executive functioning issues around the tasks of daily living, or your physical energy level and sleep cycles fluctuate, self-employment may be the only viable work option, in which case you will have to fit your skills into a self-employment framework.

If you are not ready to hold down a job or work for yourself, consider the wide range of alternative options. For example, you can always volunteer doing something related to a special interest. I know someone who has retained much echolalic speech as an adult and his favorite pastime is memorizing and then repeating Disney movies. He adopts almost exactly the precise voice of each character and switches between characters effortlessly. The members of the local senior citizen center absolutely love to hear his rendition of their favorite Disney classics and they appreciate his visits! He may not be earning a wage, but he is certainly contributing to society. Find what you love to do, what you are doing already, or what you are good at doing, and build out from there.  Every single adult has something to give to the world.

Lastly, consider all of the other factors of life that can impact employment. This will help you determine what types of supports you might need and how you might go about assembling them. For example, if you do not drive and are not able to tolerate public transit, you will need a job in walking distance or a home-based job and if you need a job coach, then you will have to find one that can travel to your neighborhood. If you don’t understand your transportation challenges in advance, you can’t plan for employment effectively. Specific areas to look at carefully include transit, personal care, dressing, eating, sensory issues, environmental factors, level of physical activity, pace of work, degree of socializing required by the job, anxieties around certain tasks, and executive functioning before, during, and after work.

Again, keep in mind that it can take time to organize a team, hire or consult with experts, make plans, and try out different ideas. Autistic adults often need extended periods to adjust to the work environment. And because of the specific social and communication issues associated with autism, autistic adults may need assistants to do the most heavily social aspects of creating an alternative path to work, specifically networking, cold calling, asking questions, or describing needs and strengths. Remember, the vast majority of positions are not filled by responding to help-wanted ads: Most people get a job via their connections to other people.

Adult Life Skills

As a Certified Rehabilitation Counselor (CRC), I am often asked what skills autistic adults need to find and keep jobs. Personally and professionally, I find the biggest problem is not the actual tasks of a job. Across the spectrum we have talents, skills, and knowledge in abundance. The bigger problem is all the social interactions, the politics of the workplace, the essential networking, and the “hidden curriculum” that is so hard to discern. Therefore, worry less about the specific job tasks you might be given and focus a lot more on social skills, self-regulation, self-advocacy, and flexible thinking.

Some people say, what do my emotions have to do with work? The answer: Everything. You need to be able to figure out what you are feeling, how much of a feeling you are experiencing, and what is socially appropriate to do for that particular emotion and that particular amount of emotion. Also, certain feelings should not be expressed or processed at work. The only way to learn how to identify and cope with your emotions is through practice. Don’t begin practicing your first day of your first job.

Many autistic adults need scales and visual aids to deal with emotions, to regulate sensory processing, to gage physical needs, and to modulate communication. For example, if you are at a very high level of anger because your boss told you that you stacked the boxes incorrectly, you need to know that it is OK to take deep breaths, pace back and forth a few times, or walk to the water fountain and get a drink to cool off, but that it is not alright to show anger to the boss, yell, refuse to continue working, or leave the worksite.

I have to watch my level of sensory integration. I have learned through much trial and error the symptoms that indicate I am overwhelmed or becoming overwhelmed, and techniques to bring my body back to a state of equilibrium. Job coaches need to watch for issues and need to be developing strategies and techniques with you so that you can match your behavior to what is expected of adults in your specific work environment. Occupational therapists can also assist not just with sensory processing but also with physical pacing, expression of emotion, and cognitive self-awareness.

Self-advocacy is important because you will encounter moments when you need to articulate your experiences and ask for assistance or accommodations around your challenges. For example, maybe you know in advance that you have difficulty regulating your amount of excitement. You have worked with your support team to create a sliding scale tool for this emotion that helps you match your amount of excitement to one of five levels and that then provides a visual clue of the appropriate behaviors for each level. You try your hardest to use your scales at work to prevent a meltdown. But without self- advocacy skills you will be unprepared for the day you need an exception. You must be able to say to your manager, “My excitement level is extremely high today and despite

using my strategies, I just can’t get myself calmed down. I need to calm down so that I can concentrate on editing this stack of articles. Can I take a 15-minute break now? I’ll stay 15 minutes late at the end of the day to make up the time.”

You do not need extensive verbal fluency to advocate for yourself. I worked with a young gentleman who now carries an index card with a red stripe on one side and a green stripe on the other side. He shows his boss the red stripe if he does not understand what the boss wants him to do, which always causes him agitation and anxiety. When the boss sees the red stripe, she is careful not to overwhelm him further. She usually stops talking, switches to visual instructions, and often gives him a few minutes of breathing room. Conversely, if he is feeling comfortable with a set of instructions and feels ready to proceed with the next activity, he shows his green stripe.

Flexibility is also crucial and very difficult to teach. Again, visual aids such as “if/then” flow charts can help. Also build up your tolerance for disruptions, interruptions, changes to the schedule, or suggestions from co-workers by rehearsing what you will do and what you will say. Writing conversation scripts in advance helps some of us. For example, if your manager frequently asks you to do tasks in novel ways, a script such as, “I see you would like me to repair the motherboard differently. I’ll try, but I need a few minutes to adjust because I thought I would do it the old way,” might give you the time you need to switch gears, accept new instructions, prepare yourself for a new experience, or cope with your emotions about the change in ways that are appropriate for the workplace. Remember, you can utilize communication cards and other visual strategies to get your point across if talking under stress is too difficult, if talking is not your first choice, or if talking is not an option.

Hidden curriculum is perhaps the hardest component of work life to tackle because the context of an interaction is so important: Something said in one moment may be appropriate or inappropriate depending on what else is going on, who else is in the vicinity, or even who is talking. This is why strategies for behavior, facility with emotions, and self-advocacy are such a crucial foundation for social interaction in the workplace. Should you come to a social moment you do not understand, you will still be able to use your foundation skills to remain calm, act appropriately, and request data or input. While you use your foundation skills to get through the day, you can begin to catalog hidden curriculum information for future use.

An example may illustrate what I mean. Let’s say you are friends with a certain co- worker, and the two of you always have coffee together every morning before starting work. Suddenly, on a Tuesday morning, he walks in the door, ignores you, mumbles “Bad hair day,” grabs his coffee, and slinks into his office, shutting the door. You are left standing there baffled and also upset. Why is he talking about hair? Why did he grab his coffee and go away?

Your solid set of foundation skills come into action: You know what is appropriate to do when you are upset, how to show your feelings, and what techniques help you get yourself back to a regular level. But later, you can investigate to recover the missing hidden curriculum data. You find out from the person sitting next to you that the expression bad hair day means the person is having a bad morning. Now you realize your friend is probably just having a rough day and doesn’t want to talk to anyone yet. In this case, it makes sense not to be offended. You decide to ask how he is doing at lunch.

Here is another example. You start a new job, and on the second day, you observe the boss waving to the UPS guy. He yells out to the UPS guy, “Hey you! Hurry up!” and then laughs. The UPS guy chucks a roll of 2-day stickers at the boss, laughs, scans a box, and steps out.

On day three, you are asked to give the boxes to the UPS guy at the end of the day. He is taking a long time scanning each box. Just like the boss, you say, “Hey you! Hurry up!” The UPS guy scowls at you. After the UPS driver leaves, the boss chastises you for speaking to him inappropriately. You are totally confused, deeply embarrassed, and also worried that you might lose your job. You use your foundation skills to identify these feelings and cope with them privately. You use a script you developed in advance that provides a framework for responding to criticism appropriately. You go back to your job. Later that evening, you call your job coach and ask for the hidden curriculum. Your job coach explains, “Oh! The UPS guy – that is the boss’s cousin! They yell at each other all the time but it is just a joke. You, on the other hand, should not yell at the UPS driver. It does take quite a long time to scan all those boxes and get them on the truck.” You and your coach decide together that the coach will let the boss know you were simply confused but understand now.

These “adult life skills” are absolutely crucial to work success, whether you are folding boxes, illustrating toothpaste tubes for a multinational corporation, answering the phones at a small neighborhood bike repair shop, repairing iPhones, volunteering at a paperclip museum, delivering pizzas on the weekend, reciting Disney movies for seniors, or running an X-ray machine. Don’t discount the importance of these skills. You will use them every single day, no matter what you are doing with your life and no matter how your autism impacts you.

Work Culture

Another key aspect of working that is not considered enough is work culture. If you are an adult on the autism spectrum, or if you are a professional or family member helping an autistic adult, carefully analyze the culture of a workplace and how well the culture matches your needs and values.

I interface with employers on behalf of clients regularly. Part of what I am doing is advocating on behalf of clients who might work there: I am explaining autism and what autistic adults can contribute, I am describing the types of accommodations that might enable an autistic adult to succeed at a particular job, and I am pointing out ways that hiring someone with a specific set of talents or interests will be valuable to the company. But I am also assessing the worksite culture and how the different adults I am assisting may or may not fit in to that culture.

If you just can’t managing the executive functioning of getting into a suit and tie every day, if you loathe the idea of punching in with a time card at an exact time, or if you do not like conforming to a standard pitch line about the company and its activities, I am not going to recommend a position for you at a worksite with a strong corporate culture, strict time requirements, a dress code, and policies on what employees can say about store products. On the other hand, if you need to know exactly when your shift starts and stops, and if you need to know exactly what to do each moment of the day, a corporate environment might be better than a local shop with an informal schedule and rotating tasks.

Some people are going to say, “Isn’t this obvious? If you are scared of heights, don’t become an astronaut.” To a degree the concept of workplace culture in employment planning is a given. But when it comes to autism, this issue magnifies in importance. You must know yourself thoroughly, and whoever is assisting you must take workplace culture into serious consideration.

Conclusion

Because our culture is not a meritocracy, and because the world of work in our society places such an extraordinary emphasis on social connection, autistic adults frequently need extra assistance in this area. Teaching someone how to navigate the social environment at work adroitly is complicated but not impossible.

Keep in mind that learning happens over time. It is totally normal, for example, for adults to try a variety of jobs and fail at several, yet when an autistic person is fired everyone acts as if the world is falling apart. I was complaining to a fellow autistic friend of mine a number of years ago when yet again, a job I was trying was just not working. I was deeply frustrated and disappointed. She said, “What’s wrong with failing? You can always get up and fail something new!” Autistic adults have just as much right to change their minds, fail, try again, adjust, adapt, and grow as any other adult. What you are doing at 20 is rarely what you are doing at 40 or 60.

Often autistic adults do not fit the typical profile of someone who needs employment supports. Autistic adults have a unique learning profile and unique challenges in communicating and socializing that can be difficult to pinpoint or to address with typical accommodations and services. When it comes to autism, it is vital to put all notions aside. I know autistic adults with verbal fluency and master’s degrees who need visual aids and a job coach to maintain employment. I also know autistic adults who use electronic communication devices and need supports around basic activities of daily living and they are extraordinarily successful at college and have much to contribute to their chosen fields of endeavor. Always presume ability while simultaneously investigating openly what someone’s support needs might be.

In conclusion, I restate my unequivocal belief that all adults on the autism spectrum have something to contribute to their communities and to the world. It is up to the rest of us to help each one reach his or her potential. When society broadens our value of all types of positive contribution, the chances to create a high quality of life full of dignity and activity go up.

Vision And Its Valliant Attempt To Derive Meaning From The World

November 4, 2011

By Carl G. Hillier, OD FCOVD

“It used to be thought that having 20/20 eyesight, and having healthy eyes, was sufficient to be visually prepared for success in this world. But what we know today is that the visual skills necessary for learning go far beyond the ability to see 20/20 and having healthy eyes.”  [i]

A paradigm shift from eyesight to vision has been in process for years and continues to be greatly needed. Eyesight is the ability to discriminate the differences between small things. Vision is the ability to derive meaning from the world, and to guide the intelligent movement of the body. The ability to discriminate the differences between small things (eyesight), occurs, when environmental details are captured from reflected or emitted light, through an imperfect optical matrix of biologically combined materials, and travel along the optic nerve traversing a single synaptic cleft, transporting the collimated light from the surrounding world, and are then sent to the occipital lobe, that most distal mass of cortex in the back of our skulls.

Twenty percent of these fibers leaving the eye, sneak off quickly along the fast acting magnocellular pathway, bee-lining it directly into the midbrain, not even considering entry into the thalamus. These neurons establish a liaison with regions of the cerebellum, the spinal tracts and the posterior parietal lobe, establishing a spatial construct inside of which cognition can safely reside. This spatial awareness arrives in advance of conscious

The ability to derive meaning from the environment, and to guide the intelligent movement of the body (vision), begins where eyesight leaves off. The outpouring of nerves leaving the occipital lobe feed these visual details forward to all lobes and crevices of the brain, weaving the warp and weft of our human experience.

The ability, skill and endurance of the visual system to derive meaning from the world, depends upon a triad of muscular skills and panoply of perceptual and cognitive ones. The muscular abilities include accommodation, binocularity and tracking; tracking skills and are sub-divided into fixations, pursuits and saccades.  These consciously driven muscular abilities are developed because of our interactions in the world. Once skillful “muscular” contact with the visual world is available, then visual perception develops; perception becoming the liaison between the illuminated world and our cognitive one.

Beyond determining the presence of clarity, eye-health, and muscular control in your patient (accommodation, binocularity, fixations, pursuits and saccades), a full evaluation of the visual skills necessary for full engagement in our increasingly demanding world, should also involve assessing visual perception and visual cognition. Unfortunately when these skills are assumed to be intact, or, when the testing of these abilities is overlooked, people and most commonly children, suffer from being misunderstood. Behavioral and physical symptoms are exhibited which may lead to treatments that are ineffective, or worse, inappropriate.

Visual dysfunctions often masquerade as behaviors such as ADHD/ADD and Dyslexia. Fortunately, these are diagnosis of exclusion, and until visual issues are ruled out, a diagnosis of these entities cannot be clinically established. Unfortunately, the siren song that 20/20 is perfect vision can lull the most disciplined clinician into thinking that all is well, when all is not.

When the critical muscular, perceptual and cognitive skills are not sufficiently developed, their development can be acquired through the careful application of a formalized vision therapy program, a program designed by Developmental Optometrists; optometrists trained in the diagnosis and treatment of the neurological, optical, perceptual and developmental foundations for cognitive development. The College Of Optometrists In Vision Development certifies those optometrists specializing in this discipline. Their website (COVD.org) provides references for the scientific foundation from which their clinical work is derived, as well as referencing the contact information of doctors throughout the world who provide this specialized assessment and treatment.

Children’s innate neurological malleability enables the treatment of their visual delays to be quicker and easier than adults; the assumption, though, that adults are too far beyond a critical period to be helped, is now often considered to be clinically naive. Not only is rigorous research into cognitive neuroscience revealing that an enormous amount of cortical plasticity exists in the adult human cortex, dramatic clinical breakthroughs have been made in heretofore-untreatable visual conditions such as adult strabismus (eyes out of alignment). Susan Barry, PhD, Professor of Biological Sciences and Neuroscience at  Mount Holyoke College in Massachusetts – AKA “Stereo Sue” – had such a dramatic experience of visual awakening, she  was compelled to write a book about her experience, an account so dramatic that world recognized neurologist and author, Oliver Sacks, MD, wrote the forward to her book; Fixing My Gaze- A Scientist’s Journey into Seeing in Three Dimensions. Dr. Barry not only describes her recovery, but the recovery of many other adults who have had the same opportunity to break into the third visual dimension of our world.

Stereo Sue saw her first snowfall in 3-D, after treatment with optometric vision therapy at the age of 49 years old, an age far older than clinical success was thought to be possible. Her world literally expanded. She now enjoys the world as it is meant to be seen, in rich dimensionality; “a medium on which tree branches, flower blossoms, and pine needles floated.” Surgery was performed twice as a child, without success. What would her life have been like if, as a little girl, she could have had vision therapy, and had the opportunity to see the world then, as it is now?

Vision develops as we engage in the world. Again, I am not referring just to 20/20 eyesight.  Vision, as described earlier, can be developed in those of any age, who have not experienced its wonderful gift. The behavioral challenge of not understanding the visual world is devastating; the ability of being able to understanding the visual world is a gift.

[i] This quote is as meaningful today, as it was given over 40 years ago by Dr. Robert Kraskin during a seminar given to Developmental Optometrists who were concerned with the mismatch between the physiological preparedness of young children, the cultural demands imposed upon them. awareness and thus allows for abstract cognitive thought and imagery to flourish without any obligation to act as a sentinel for spatial security.

 

Celebrating Holidays: Autism College Q & A with author Ann Palmer

November 1, 2011

Join us for a free Q & A with author and parent Ann Palmer on Thursday, November 17 from 6:00 to 8:00 PST. (Sign up for our newsletter to register and we’ll send you information about how to ask questions in the newsletter).

Celebrating holidays together is a way that families stay connected and feel supported. Families living with ASD especially need the support and understanding of their extended family members. But family get-togethers, holiday gatherings, or large social events are typically very stressful for a family with a child with ASD. Ms. Palmer will discuss why these events may be difficult and what family members and friends can do to show their support and make the holidays easier for the child with ASD and the parents.

Ann Palmer is the parent of a 28 year old son with autism and has worked in the field for the last 20 years. She was the Parent Support Coordinator for Division TEACCH and the Director of Advocacy and Chapter Support for the Autism Society of North Carolina. She is currently a faculty member of the Carolina Institute on Developmental Disabilities at the University of North Carolina in Chapel Hill.

Ann is the author of three books published by Jessica Kingsley Publishers. Realizing the College Dream with Autism or Asperger Syndrome: A Parent’s Guide to Student Success was written about her son’s experience at a large state university. Parenting Across the Autism Spectrum: Unexpected Lessons We Have Learned was co-authored with Maureen Morrell and is an excellent resource for parents and family members of newly diagnosed children. Her newest book, A Friend’s and Relative’s Guide to Supporting the Family with Autism: How Can I Help? will be released in June 2012.

 

Following Ezra: Lessons on Raising a Child with Autism

November 1, 2011

This post was originally published on my  Huffington Post blog.

Recently one of my publishers sent me a book, Following Ezra: What One Father Learned About Gumby, Otters, Autism, and Love from His Extraordinary Son. Having just emerged from many months of researching and writing book number five on autism, I was not predisposed to read anything associated with the A-word. However, being partial to interesting book covers, I couldn’t resist the urge to peruse this memoir. Once I opened it, I couldn’t put it down. Following Ezra by author Tom Fields-Meyer, is not just a book about raising a child with autism; it’s a very well-written book about the trials and tribulations of being a parent, period.

One reason this book is such a good read is that covering human interest stories is what Fields-Meyer does for a living. He is a former senior writer for People and has written for  the New York Times and the Wall Street Journal. He is a master storyteller, and this time he recounts his own personal story and that of his son, Ezra, from age 3, when he was diagnosed, to his bar mitzvah at age 13.

Another reason is the approach that Fields-Meyer decided to take in raising his son with autism, who didn’t like to play with children when he was little, obsessively lined up plastic dinosaurs, and avoided eye-contact. In the prologue of Following Ezra, Fields-Meyer describes his quest of searching for the right doctors, diets, medicines and therapies. But what he discovers is that he has been focusing on the wrong thing: “It wasn’t about finding the right expert for my child; it was about learning to be the right parent,” he writes.

For Fields-Meyer, learning to be the right parent meant developing a relationship with his son by following Ezra’s lead to learn more about his interests, motivations and way of thinking. Fields-Meyer discovers that Ezra has an incredible memory and an enthusiasm for life, and he decides to focus on these qualities to help him learn and grow. Ezra loves animals and going to the zoo; he loves Disney movies. At some point Ezra becomes obsessed with the calendar and celebrates important dates, such as the first time he set eyes on a Cardigan Welsh corgi, or the first of the month, by waking up at dawn and running around the house yelling “It’s the first day of May!” Fields-Meyer decides to celebrate with him. (On another note, having a child with a great memory for dates is certainly an added plus when you are writing a memoir.)

There is a scene in the book that helps explain Field-Meyer’s approach to parenting. Before Ezra was officially diagnosed, his parents took him to weekly visits to see a therapist, who tried to help Ezra by drawing him out. One day, when his wife tearfully expressed the frustrations of trying to play with him and just the situation in general, the therapist told them, “You have to allow yourself to grieve for the child he didn’t turn out to be.”

As Fields-Meyer explains, many parents in this situation are in mourning for the child they expected and hoped to have, and they have to go through a mourning process so that they can move on, as the therapist rightly pointed out. Only, he didn’t feel that way, because he hadn’t had any expectations about the child he was hoping to have. Over the years he’d seen acquaintances who wanted their children to go into the family business or become lawyers, or who didn’t want them to be gay. These parents were disappointed in their children when they didn’t turn out the way they expected. Fields-Meyer never wanted to be that kind of parent.

Most parents of children with regressive-type autism (children who developed normally and then lost the skills they had gained) would understandably have a different outlook. In those cases, parents mourn for the child they did have, the child that was interacting with them, that they saw change before their eyes. That’s a different situation. I have met many parents of children like mine, who showed signs of having significant developmental challenges from early on, and many of them mourn the child they wish they’d had, while accepting the child they do have. Personally, I relate to the author’s point of view. Raising Jeremy, who still requires 24/7 care at age 22, is exhausting and not without struggle. But whenever I read the news of the day, I am grateful that my son will never be maimed in war, become a serial killer or turn out to be a stockbroker on Wall Street who bilks trusting clients out of millions of dollars.

It’s clear that it is not always easy for Ezra to be Ezra, or for Fields-Meyer to be the parent of Ezra, and Fields-Meyer does not gloss over the challenges and weariness. He may not mourn for the child he did not get, but he certainly does not consider having Ezra as being a special blessing or a miracle. Parents will recognize the painful situations that many of us share: the haircuts where Ezra feels so tortured he grabs the scissors and throws them at the hairdresser; the times that Ezra runs out of the house clad only in his underwear; or clothes shopping expedition when Ezra licks his image in the mirror and then puts the shirt on — backwards.

Raising a child who has obsessive thoughts and who verbalizes them constantly can be truly exhausting. Fields-Meyer describes how, a few weeks before Ezra’s bar mitzvah, he helped Ezra put aside his obsessive thoughts about the Complete Star Wars Encyclopedia and gift cards he hopes to receive. Fields-Meyer takes him for a walk and listens to Ezra explain the mental jam he is in. Fields-Meyer instructs him to take all his thoughts about the coveted presents, put them all in a black lump in his head, pull the black lump out of his head through his ear, and leave the lump under a tree. He instructs him that if he has more obsessive thoughts before the bar mitzvah, he should send them there. This seems to work.

There are humorous yet embarrassing situations in this book that parents will relate to, such as the time Ezra asked the obese neighbor how he got so fat, or the day Fields-Meyer learned that Ezra could read. When Fields-Meyer asked why he set off the fire alarm, Ezra replied, “It said ‘pull down.'”

In a blog post on Fields-Meyer’s website, he describes a family custom that explains his attitude toward raising Ezra:

We have a custom in our family. When somebody breaks a glass, we celebrate. As soon as you hear the shards shattering on the kitchen floor, the rule is that you say: “I hated that glass! Thanks for getting rid of it for me!” Because what else can you do? Get angry? Make the person pay the price? It’s not going to bring the glass back. So we make the best of what we have, and we always try to make life a celebration. And then we clean up the glass.

Ezra is now 15, and Fields-Meyer has helped him find a way to channel his interests and obsessions through the use of technology to give him an outlet to express himself, and perhaps to have a future career. Next month, Ezra will be the published co-author of a children’s book E-MERGENCY with New York Times bestseller Tom Lichtenheld, based on an animation Ezra made when he was 12. I’m looking forward to reading it. The book cover is pretty cool.