FW: January Monthly Newsletter: Autism: Family Issues & Relationships

January 4, 2011

This issue includes a great article on how to stay connected as a couple after the AS diagnosis. There are also some great book recommendations for couples, people married to someone with AS, and kids/siblings/classmates. Gladys

Date: Tue, 4 Jan 2011 09:33:20 -0500glad1@...From: info@...Subject: January Monthly Newsletter: Autism: Family Issues & Relationships

Autism Newsletter

Articles Resources Books Teaching Tools January 2011

Proudly brought to you by www.AutismTeachingTools.net & www.AutismResourceCenterofSouthFlorida.com

Topic This Month

Family & Relationship Issues

Member Articles

After the Autism Diagnosis: Staying Connected as a Coupleby RomaniecHow does a couple stay connected and strong once autism has become part of their world? When families receivethe autism diagnosis a period of mourning follows. Parents describe their grief as very much like that of the loss of a child. This may sound like a cliché, but it’s true. In many ways, it is a loss. The child we imagined and the life we dreamed for the family is now replaced with a huge void of uncertainty.

Article continued at botton of page...

Books about Relationships

Click here to view all books about Family & Relationship Issues.

Strengthening Relationships

When Our Children Have Special Needs

When there is a child with special needs in your family, it can be easy to overlook your own needs, desires, and dreams, or those of the ones you love. Long-awaited and much-needed, this book addresses the real-life impact a special needs child has on family relationships.

Price: $24.95

Click here to order

Click lhere to view the Spanish version of this title.

Click here to view all Autism foreign language titles .

Loving Mr. Spock

If you love someone with Asperger’s, or have Asperger’s yourself, you can learn a lot from this book. As a popular advice columnist in the UK, Barbara s never suspected she’d be the one needing the relationship advice. But when she fell in love with Danny, a man with Asperger’s Syndrome, she quickly learned to expect the unexpected.

Price: $19.95

Click here to order

Books for Siblings with Autism

Click here to view all books about Family & Relationship Issues.

Sometimes My BrotherHelping Kids Understand Autism through a Sibling's Eyes

Winner of an iParenting Media Award, this adorable picture book shows readers the challenges that children with autism face and the obstacles they overturn. It is lovingly written in the perspective of three-year-old , who explains his experiences with his older brother, Gavin, who has autism.

Price: $14.95

Click here to order

Autism Through

A Sister’s Eyes

When young people have questions about a brother or sister with autism or Asperger’s Syndrome, clear answers can be hard to find. Written by Eve Band, PhD, a clinical psychologist, this book gives voice to ten-year-old ’s story: her questions about her brother, her search for answers about autism, and her exploration of her feelings as a sibling of a young man with autism. Price: $14.95

Click here to order

Books to Help Classmates Understand their friends

with Special Needs

Click here to view all Children's Books.

Special People, Special Ways

Winner of a 2009 Preferred Choice Award by Creative Child Magazine! “Share a joke or a dream. Make someone feel good. We need laughter, hugs, and to be understood. . . . Though we seem different, inside we’re the same. Our hearts are for caring, no matter our name.” Arlene Maguire’s delightful rhymes combine with Sheila ’s rich watercolor illustrations to take the reader on a journey of discovery. Each page portrays positive images of children with various disabilities. Winner of an iParenting Media Award, this book illustrates that beyond our physical limitations is a world of unique gifts for each of us to share. Teachers and parents love to read this book aloud to promote understanding and tolerance at school and at home.

Price: $14.95

Click here to order

Friends Learn

About Tobin

Parents and teachers will find this book useful in teaching mutual understanding. Friends Learn About Tobin shows how Tobin’s friends accept and appreciate his differences, such as discomfort with change, repetitious behavior, a knack for numbers, a photographic memory, literal interpretation of words, and sensitivity to noises and crowds.Price: $16.95

Click here to order

My Friend With Autism:

A Coloring Book for Peers

and Siblings

Written for classmates of spectrum students and the classmates’ parents, this kid-friendly book explains in positive ways that children with autism are good at some things, not so good at others—just like everyone else!

Price: $9.95

Click here to order

Captain Tommy

More than a delightful story, Captain Tommy teaches understanding and kindness. Tommy goes to “space camp" and meets , a boy who seems “spaced out" and different from other children. The camp counselor makes Tommy the captain of the spaceship, and gives him the job of getting to interact with the other space-kids. After several attempts, Tommy succeeds, and shows everyone how to climb a “space pole" and slide back down. The kids are impressed, and becomes a true part of the group, no longer “lost in space."

Price: $9.95

Click here to order

Books for Raising Children

with Autism Spectrum Disorders

Click here to view all books about Family & Relationship Issues.

1001 Great Ideas for Teaching and Raising Children with Autism Spectrum Disorders

Winner of a 2006 Teachers’ Choice Award! Parents and professionals can now bypass countless hours spent seeking answers to the mystifying day-to-day challenges of autism. In a snappy, can-do format, this book offers page after page of try-it-now solutions that have worked for thousands of children grappling with sensory, communication, social, behavioral, and self-care issues.

Price: $24.95

Click here to order

Autism Early Intervention

FAST FACTS

Parents who find out their child might have autism are overwhelmed with doctors, therapists, and information all at once. It can be difficult for these parents to find the answers they need in a sea of resources, especially for a parent who is not familiar with autism terminology and treatments. This little book is the perfect way to get acquainted with autism and early intervention strategies. It answers questions such as: What is autism? What are the signs of autism? Who is involved in my child’s evaluation? What should I expect at the time of diagnosis? What are the goals of early intervention? How do I choose which treatments are right for my child?

Price: $9.95

Click here to order

Inspirational Books

for Young Adults on the Spectrum

Click here to view all books about Family & Relationship Issues.

Dear Charlie

In this heartwarming book, a grandfather offers loving advice in a series of letters to his grandson Charlie, who has autism. His letters educate and inspire, while painting a beautiful, positive portrait of children with autism. He explains what autism is and what it is not, offers social dos and don’ts, and encourages Charlie to be who he is and follow his dreams. Makes a great gift for young adults on the spectrum!Price: $19.95

Click here to order

The Heart of Autism

At long last, the Autism Angel spreads her wings! This powerful guide to intervention and education empowers you with skills and motivation to foster success in youngsters with autism. Each page contains uplifting strategies, experience-based wisdom, and heart-fueling inspiration to help caregivers and professionals apply the techniques and attitudes that have made Abeles one of the most respected professionals in the autism community.

Price: $19.95

Click here to order

Member Articles

Article continued from top of page...

After the Autism Diagnosis: Staying Connected as a Coupleby Romaniec

The divorce rate in couples who have a child on the spectrum has been suggested to run as high as 80%. Personally I have not seen that level of divorce but I have witnessed virtually every couple whose child is diagnosed with autism go through severe difficulties. I don’t believe even seasoned marriage counselors are fully aware of the complex stressors these parents face, that is unless the counselors have an autistic child themselves.

In my conversations with parents I mentor and in ordinary conversations with the families on this autism journey with me I have noticed a reoccurring pattern couples go through once their child is diagnosed. I call this the six Grief/Acceptance stages. It follows closely the grief model developed by beth Kübler-Ross M.D of the five stages a dying or grieving person experiences while accepting death: Denial, Anger, Bargaining, Depression and Acceptance.

However, as in many other ways, autism is unique unto itself, and the stages that parents of a spectrum child go through are not quite the same as Dr. Ross’ model. Compounding matters, each person goes through these stages at different times, and at different speeds. This, in itself, is a catalyst for much of the stress I see developing between the couple. Although I am not a professional counselor or psychologist, I am a mother of a recovered autistic child, a mother to two typical children and a wife to a wonderful husband. And our own personal experience definitely mirrored the same pattern I have seen in other couples.

THE SIX STAGES OF GRIEF/ACCEPTANCE

FEAR. Not just fear, but absolute terror is commonly felt because of the global erosion autism can bring to the family. Fear can seep into every aspect of the marriage and the family unit: fear of the unknown, fear of the child’s and family’s future, fear of your own ability to handle the physical and emotional stress, fear of your ignorance of what autism is, fear you will fail yourself, your spouse and your child on any and all fronts. At the moment of diagnosis, life changes. I often hear from couples where one partner gets stuck in this stage, and it’s more often mothers than fathers. Men want to act; women typically have to “process” and unfortunately, autism can be an endless loop in which it is easy to get stuck. Not just stuck, but paralyzed from making decisions. Unfortunately the nature of autism requires that parents quickly begin educating themselves about autism and treatment options and make decisions about their child’s future – at least his or her immediate future. Yet, I have often talked with frustrated fathers who want to pursue dietary and biomedical intervention but the mothers are afraid to move forward for fear of making a mistake. Family backgroundsand core personal beliefs affect to what extent fear immobilizes a parent in this stage. And, while this one is the toughest to overcome, get through it you MUST. There are five other stages to go through before real positive changes begin to happen.

ANGER. Once the fear begins to dissipate, anger sets in and it is spewed in a variety of directions. You will feel angry at circumstances in your life that are a direct result of the child’s autism, angry at what might have caused the autism, angry at yourself/your spouse if you think either of you ‘did something’ that may have caused the autism. You may even feel angry at your child, which is often the hardest feeling to bear. You will also feel angry with people who do not take the time to tell you what to do next. I see huge amounts of angerdirected at the medical community for not noticing the symptoms of the child’s behavior sooner or for mitigating a parent’s concerns. This was very real for my family as I realized how much information I was going to have to find on my own.

DENIAL. This is commonly the stage I see many fathers get stuck in, and it can be a vitriolic sort of denial. I hear from mothers across the country who experience their husbands’ verbal abuse, who share tears of isolation and loneliness and feel they are fighting the battle for their child alone while the husbands go through, or freeze, at this stage. It can take manymonths, if not years for some men to process through their child’s diagnosis. It took my husband a full year and a half to even say the word “autism”.

BARGAINING AND/OR GUILT. In this stage the coupletries to mitigate the disorder by figuring out what they will or will not do in order to cope. Will they pursue diet, biomedical treatment, ABA behavior therapy, a home-based program, supplements or just plain old pharmaceutical options? Virtually every decision or course of action is met with a bargaining mentality (if I do this then I won’t need to do that) or guilt (I need to do all of this or I am not doing enough). This is the stage in which couples can end up divided into two camps as to treatment for the child. In many cases, onepartner is passionate about a particular treatment while the other is either opposed to it, or is still caught in Stage #1 and unable to make a decision either way. It is in this stage that I see couples start to drift away from each other, when fights begin or intensify to new levels of disagreement.

ACCEPTANCE. Acceptance comes in different forms fordifferent couples. For some couples it comes bit by bit. They get to a point that the decisions they have made, the routine they have established and the regular improvements they have seen in their child result in acceptance of autism as part of their family and their lives. Their experience has taught them that they can handle it in some sort of orderly fashion. Othercouples seem to experience moments of revelation where they experience in mind and heart that autism is just one aspect of their child, and their family, that the disorder is happening to the child, and their role in being their child’s loving guide becomes clear. However acceptance happens, hopefully they have reached this point together.

RESOLVE TO OVERCOME. The final stage I witness inmany of the newly diagnosed families I mentor is a resolve to overcome. In most cases, these are parents who have devoured the wealth of information that now exists about autism, have gone to the latest autism conferences and networked with other parents who have been successful in their struggles with autism. These parents actually find HOPE in the midst ofthe information. They hear about children recovering from autism and resolve to do whatever it takes to create the widest range of opportunities for their child, based on his own individual characteristics and needs, to learn and grow. At this point they are ready to begin taking the steps toward helping their child to recover, or achieve his highest level of functioningpossible.

DISCOVERING WHAT WORKSWhat is remarkable to me as a parent mentor is how radically our progression through these stages can vary. Some Men want to act; women typically have to “process” and unfortunately, autism can be an endless loop in which it is easy to get stuck. parents fast forward through them in lightening speed; otherscan take years to go through a single stage. And therein lies perhaps the biggest challenge for a couple: how to stay connected on the journey, respect each other being at different points of acceptance, and yet work effectively together for the benefit of the child. Unfortunately what I see often is that couples get stuck in various stages and precious time is lost. Or although both are committed to the child, they reach animpasse. Any one of these six stages can interfere with parents coming to agreement on one or more aspects of caring for their child with autism. But I also have spoken with couples who although united in their desire to help their child, wanted to move forward from different angles. One parent wants to aggressively pursue one treatment while the other wants to pursue another. They both want the best for their child but they are adamantly convinced their ideas are the only ones tobenefit their child. Or worse, they are flat out worried their partner’s choice will actually harm the child. If there ever was a time to compromise and negotiate it would be at this crossroad; unfortunately, not all parents reach accord. And sadly, it is the child who suffers.

Couples find themselves united or divided in workingthrough autism based on several influences they personally bring to the interaction. One factor that contributes to “togetherness” is their own communication and interaction style. Are they naturally argumentative or competitive with each other? Is one more dominant over the other? Does oneoften play the martyr in their marriage? Or are they naturally in sync with each other’s needs, fears and anxieties? In virtually all relationships in which a child is diagnosed on the spectrum, roles will change in some way or reverse entirely. Partners who can consciously work through the rocky times often find a new way of communicating and relating to one another. While their roles in the marriage are forever changed,many find it to be for the better.

Over the years of talking with couples, and with women in particular, I have shared with them some funny anecdotes of a ‘strategy’ that quite simply WORKS to bring couples to the same place of acceptance and resolve, but perhaps a bit quicker. At the 2005 DAN Conference in Boston I happened to be part of a parent panel. A woman stood up and asked a questionabout how to improve her marriage through this autism journey. I quickly took the microphone and offered a series of anecdotes that had the audience cheering and laughing. The positive reaction of the audience propelled me to offer these same suggestionsto other couples as a means of working through thevarious stages together, and on a more even pace.What I shared at the DAN conference, on the subject ofimproving communication in the marriage during this time of crisis, follows.

“I got a call from a mom I was mentoring on diet andbiomed. She was FURIOUS at her husband for feeding herson gluten foods that caused his bad behavior the entire day. She told me that when her husband got home she was going to make his night as miserable as her day had been. I told her to stop and rethink that idea. Instead of launching an attack on him why not put the kids to bed early and give him a night he would not forget. And then in the morning gently mention to him how much you need his help to maintain her son on the diet, etc. Hmmm, wonder what would get his attention more- nagging or good sex?

Mom was surprised to hear me suggest this, because being intimate with her husband was the furthest thing from her mind. She was MAD. So I talked to her further about needing her husband on her side, not fighting her or tuning her out. She needed to get his attention in a way he would remember. She called me the next day to say it worked and her husband swore to help with the diet more.

Then she asked for advice on how to get him to help her with other aspects of their relationship and their child’s program (more input from him, going to conferences with her, attending IEP meetings, etc.). As with many other husbands in the autism community, he was feeling neglected by his wife going into hyperdrive to help their child. In fact he even said “You don’t pay attention to me any more.” Sound familiar? So I told her she needed to REALLY get his attention during a weekend awaythey had planned. I suggested she not talk about the kids Friday night or Saturday night because he was to be her total focus. However, on Sunday morning at breakfast she was to gently give him her list of things she needed from him. Needless to say it worked and he was definitely a happy man too. He even cameto one of my seminars on GFCF diet shortly after.

So this same type of advice has been passed along to many other women and several have emailed or called to say “It worked! He’s on board!” I even had a woman recently email me to say she was off to take a shower. She needed to get her husband on board with something and knew what would best help get his attention.

Another woman told me she got her husband to come to a DAN conference with her by promising the hotel room would be put to good use. He got a lot out of the conference in more ways than one. He then began to help with other things with the kids when they got back, including joining her at IEP meetings.Bottom line, many husbands are in a level of emotionalshutdown. Women tend to handle autism differently. We spring into action, call our friends for support and begin lots of research. The guys cannot necessarily do this right away. They need to know they are supportive of us, but we tend to push them away because we get angry at them for them not being at our same level of crisis mode.

So, as hard as it may be I suggest to women to go against your ‘ticked off’ instinct and instead go in the direction of meeting your husbands’ needs. Most men will more than jump at the chance to be supportive of your needs after they have been “replenished emotionally” so to speak. It may take time but at least the effort is being made to stay connected. Autismis a difficult thing for any couple to endure. Those that come through this are usually stronger for it. My husband and I are definitely in that category. And I am one of those who “got his attention” first in this manner. He is now my biggest fan and greatest supporter. And our son is recovered thanks to ourcombined efforts.”

After I related this story at the DAN conference, two women came up to me laughing and crying at the same time. One said she realized how much harder she had made it on herself by fighting her husband all the time and pushing him further and further away. Another woman came up with her smiling husband in tow. She too acknowledged she had been “doing it wrong” and planned to change things that very night. Her hubby was very happy to hear this. And several women stoppedme in the hallway at the conference to say “You are so right!” Moms reading this article, listen up: I got an email from a woman wondering if she could talk to her husband right after the fun evening (ya’ know, when he is more apt to want to sleep?). Ladies, you have to realize this man probably has no respite from the worry or the crisis and part of this strategy is to give him that, so you will receive help from him in return eventually. I told her NO and to back off on any demands for a bit. And then when she did ask for something make sure it was concrete, something specific he could do so that he feels he is beginning to meet your needs and you are grateful.

But what if it’s the mom who is having the tougher time getting through the stages? Dads reading this: I suggest to the man to move forward anyway and gently bring her along with an air of confidence, not belligerence. Treat her like a girlfriend and remind her of why you married her in the first place. She’s feeling fragile right now and unsure of herself. There is definitely something positive to someone else taking charge and alleviating the burden she feels if she is not ready to cope with decisions at the time. She will take a more active role as she gains her own confidence in the process and in the support she’s receiving from you.

In the end, the goal is NORMAL in our families – howeverwe define that word. How do we carve that out every day of our very UNnormal lives? For me it was remembering why I fell in love with my husband in the first place. He can find humor in the most absurd of situations and I am his best audience because I laugh at all of his jokes. My daughter had to also be reminded how special she was to us and we ensured she wastreated to special moments alone with both her dad and me. And as a family we made it a point to bond together in the simple and even mundane moments. But it all began with my bond with my husband.

Nothing can totally prepare a couple for the “for better for worst” portion of their vows when it comes to receiving the autism diagnosis. But for those couples who do manage to forge through this crisis and remain united, the odds are truly in their favor that they will weather any other storm that lies ahead.

Romaniec is the mother of three children (Theresa, 8 and , 7 and , six months). She volunteers as a special education advocate and mentor to parents of children newly diagnosed with autism. She presents nationally on dietary and biomedical issues and is a frequent radio guest on the subject of autism. Contact her at MRomaniec@...

Reprinted with permission, Autism Asperger’s Digest, July/August 2006 issue,www.autismdigest.com

Nobody Survives AloneThe Gift of InterdependenceBy Lieberman, LCSWAs seen in September - October 2008

Autism Asperger’s Digest

How can I ask anyone for help? What could I possibly give in return?” In my work both as a psychotherapist and national speaker, I hear this sentiment expressed too often by parents of children with ASD. Many adhere to the unfortunate belief that in reaching out to others for support, one must be able to give an “equal” amount

in return. Perhaps they have never fully understood the gift bestowed on others just by making a request for assistance.

Asking for help builds a very personal, two-way bridge that involves receiving, as well as giving others the opportunity to meaningfully participate in your life.

We all need each other in one way or another to survive.

The majority of spiritual traditions place great emphasis on the importance of giving. What is generally missing from this lesson in humanity is active recognition that being able to give to others requires that there be

people who are able to receive. We are not taught how to receive gracefully and, in fact, are made to feel somehow selfish, or “less than” as a receiver. Learning to ask for help, therefore, also includes gaining comfort with being on the receiving end. Eighteenth century German writer, Goethe, tells us, “Human life runs its course in the metamorphosis between receiving and

giving.” (source unknown)

So why is it so hard to ask? Our culture promotes the importance of achieving independence to an extreme,

while at the same time, attaching a negative stigma to someone who displays “dependence.” In reality, there

is no such thing as being human and being totally independent. Humans are meant to live in community, supporting each other for survival.

Karyn Kedar, in God Whispers: Stories of the Soul, Lessons of the Heart (1999) talks about community in the following way:

“Community comes from the

word common. The word assumes

an awareness that we share in the

most basic way: tears, loss, love,

illness, joy, fear, birth, death, life.

We are not meant to live alone.

We are not supposed to ignore or

deny what we have in common as

human beings. That is the power

of community…It is the knowledge

that I will never be alone

when I am sick…that when I pray

for the secret desires of my soul, I

will be joined by others doing the

same…” (pp. 105)

Kedar suggests that our desire for community is not the same as our search for friendship. Rather, we are

seeking shared responsibility. What makes us a community is that sense of shared responsibility. We humans desire, as Kedar tells us, to belong to a larger community, a community that requires that we break down walls of isolation, a community that will respond to us—and that will ask us to respond in kind.

Do you hear the emphasis on mutuality, of give and take, in that process? A more meaningful notion for our lives is to strive for a sense of community with an effort towards interdependence. With true interdependence, everyone benefits!

Barbara is married with three young children, ages 4 to 7. Her oldest has autism and the middle child, who is

adopted, has challenging behavior related to early deprivation. Although Barbara had a dream career, her own struggles with degenerative arthritis and fibromyalgia make it impossible for her to work outside the home. Some days she can do no more than sit in a chair with a hot pad and watch her children play. The decision she faces each day is “do I get in there and

play with my kids, and pay for it later with severe pain, or do I sit back and feel guilty over being an “uninvolved” mom.” She does have extended family

but feels she already relies on them too much for assistance.

Thinking she has no right to ask others for help stems from Barbara’s belief that she has nothing to offer in return. Even if that were true, it is unfortunate she doesn’t recognize the two way bridge of mutuality. Even more regrettable is that she doesn’t recognize

many valuable things she does have to offer. Her children have a mom who is tuned into their emotional well-being. She is available with hugs and books to

read and songs to sing. She is a willing ear for friends and family who call her to talk about their struggles. She is an active member of her church. She has learned to crochet beautiful baby blankets for others. The list goes on.

Barbara cannot change her children’s diagnoses, nor can she do much to eliminate how her chronic pain interferes with daily activities. What she does have control over is her perspective about what truly matters in life, and that there is value in what she is able to

give others. And Barbara must develop comfort in reaching out for help.

Parents within the autism community struggle in numerous ways. Many wives and husbands end up divorcing, leaving a single parent raising a child with ASD. Finances are often stretched thin, eaten up by therapies and programs. Not all, like Barbara, have chronic health issues, but all, nonetheless, need help from others in some way.

The responsibility still rests with parents, however, to educate people in their community about ways to be helpful. More often than not, friends and family want to help; they just don’t always know how. Expect that you will need to provide some “training” and become

comfortable telling people what you need. Sol Gordon, in his book, Is There Anything I Can Do? (1994) writes,

“Let me say to all of you brave -

and often lonely - families out

there that if a friend asks you, ‘Is

there anything I can do?’ always,

and I mean always, say yes. Give

your friend a small task to do.

Sometimes we lose friends during

a crisis because they are confused

and uncertain about what is

expected of them. Give old friends

a chance to prove their reliability,

and allow friends-in-the-making

an opportunity to become more

firmly bonded with you.” (p.107)

Asking for help can be broken down into four essential steps. First, and probably the most difficult task for the

majority of people, is to believe they have a right to ask. “But there are so many other people in the world who have it so much worse than me!” It is not about comparing our burdens; rather we must recognize that everyone needs support during difficult times.

Once we get over that hurdle of acknowledging the right to ask, the next barrier is to accept it is truly possible to get help, if you take the risk of reaching out. This can include something as simple as using positive affirmations, e.g., “there is help available to me if I ask!” Others find it helpful to imagine a scene in their mind:

going through the motions of asking someone for assistance that results in a successful outcome.

The third step is simply to make a specific list of what would be helpful to you: running errands, small chores, reorganizing a closet – try not to qualify it as “worthy” or not of asking. If it helps you out, that’s reason

enough. When someone says, “Let me know if there is anything I can do,” you’re ready with a specific request.

Some people may be surprised by your quick response but in the end, you will soon discover whose offer is

made with sincerity.

Finally, take the risk to reach out, even in a small way. By doing so, you invite people into the circle of your family and provide those who care about you a chance to participate in the dynamic balance between giving and receiving, the gift that is interdependence.

Lieberman, LCSW is a psychotherapist, national speaker and author of A Stranger Among Us, a guide to hiring oneto-one providers for children and young

adults with ASD. She and her husband, Craig Ackerson, are blessed with a 20 year old son, Jordan, who has autism. Send comments to mailto:lisa@...

Reprinted with permission, Autism Asperger’s Digest, October 2008 issue,www.autismdigest.com

A New Addition to the "Family" Hiring In-Home Support

for Individuals

on the Autsim Spectrum

By Lieberman

As seen in January-February 2007

Autism Asperger's Digest

It is 8:10 on a school day morning. Your husband left early for work. All three kids must leave by 8:30,

leaving you 15 minutes to get yourself out the door for work. For the past 45 minutes, your 13-year-old daughter

has taken ownership of the only bathroom in the house. Your 10-year-old son frantically searches for his school

project, insisting you help him find it. And if that is not enough, your 7-year old daughter who has autism is in the middle of a major meltdown on the kitchen floor because you’ve run out of her favorite everyday cereal.

Times like these, parents realize hiring extra help at home, specifically a one-on-one provider for a child or young adult with ASD, could come in pretty handy. Support of this kind can be an invaluable asset in addressing the complex needs of young people with ASD

and keeping the family functionally and emotionally ‘intact.’

So, the idea is appealing? Maybe you’ve even thought of it before? Just where do you start? I’m here to share

some of the essential steps involved in finding a quality person. Parents most often tell me their biggest concern

is how and where to find competent people to interview, and then how to conduct an interview that singles out the best candidates. It’s doable! Let’s

get started!

The Job Description

Before advertising your job opening,

you need to create a comprehensive job

description. In part, a job description

defines specific duties that meet the

unique needs of your child or young

adult. But a good job description also

reflects the philosophy and personality

of your family and the individual who

will best fit within it. Think about your

family culture while you ask yourself

the following questions: Who are you

as a family? What are your values? Do

you tend to be formal or informal in

interactions with others? Is your family

environment quickly paced or calm?

As you answer these questions you’ll

gain clarity about the type of person

who fits best in your home. (For an

in-depth discussion of defining your

family culture, see Ch 2 of my book, A

Stranger Among Us, 2005.)

How and Where to Advertise

“You have to know someone who

wants to care for your child or pick

someone from a list: A list of strangers.

Sounded scary to me. This meant

I might have to interview people, and

if I didn’t like any of the ones on the

list, I might even have to advertise. I

knew people who had interviewed,

hired and trained their own respite

people. If they could do it, I could do

it.” (Kristy, pg. 51. A Stranger Among

Us)

Many parents share Kristy’s initial

anxiety about bringing a “stranger”

into their home, and prefer to hire only

via word-of-mouth referral. Yet, these

referrals are not always available. With

sufficient preparation and thoughtful

vigilance, wonderful “strangers” can

be found to support a young person

with ASD.

Classified Ads

My family has had the most success

placing a classified ad in our local

newspaper. Although it requires more

time and energy screening prospective

candidates, it broadens the field of

applicants from which to choose.

When running a classified ad, be

prepared to spend a little extra money.

Including positive descriptors makes

the ad stand out, and communicates

the potential rewards of working with

your child or young adult.

Employment ads are often listed

alphabetically with job title first. Think

carefully about the message your job

title conveys. For example, “caregiver”

connotes a sense of dependency that

conflicts with fostering independence

in the child. “Child care” may give the

impression that a babysitter is needed,

resulting in numerous inquiries from

teenagers or women who have raised

their own children and therefore

believe they have the right qualifications.

Instead, consider using words

like “mentor,” “companion,” “tutor,” or

“life-skills specialist”:

Tutor/mentor for delightful boy (11)

with autism. Experience preferred.

Enjoyable, no-smoking home. Need

own car. References required. Good

student schedule. 123-4567

Job Flyers

Flyers can be used instead of, or in

addition to, an ad. This format gives

you room for more information than

in a classified ad. Let creativity run

wild in deciding where to post a flyer.

Is your child on a special diet? Try the

local health food store. If someone

of the same religion is desired, put a

notice in your congregation’s newsletter.

Post flyers at local colleges, in both

undergraduate and graduate programs

in fields related to autism.

Additional Suggestions for Finding Providers

Some people are more comfortable

using an employment agency and

companies exist that specialize in different

kinds of in-home care. Though

more expensive, a quality agency can

save you time in placing ads and conducting

background checks.

Also, consider posting notices at nonprofit

organizations, specialized schools

like nursing or the healing arts, or via

the Internet. Job-search Internet sites

such as “Craig’s List” are being more

widely utilized.

You’ve defined your family culture,

written a job description and decided

how to advertise the position – congratulations!

You’ve completed the initial, crucial steps involving in finding that remarkable “stranger” who

will enhance the circle of your family.

You’ve also laid a firm foundation for

the next step in the process: screening

candidates and conducting a fruitful

interview.

Screening Candidates

You screen to reduce the pool of candidates

to interview only those who

most closely fit the job description and

your family culture. Decide whether

candidates will be screened by phone,

resumé or Internet. Have a concise

checklist of screening criteria, with the

highest priority items at the top, “front

and center” every time an applicant is

screened.

Sample screening checklist

Familiarity with ASD (training,education, work experience, volunteer, family member)

Reliable car, good driving record and current driver’s license

Consents to current criminal check and inquiry into driving record

Willing to adhere to non-smoking household policy

Available schedule meets your required hours/days

Will commit to one year, in good faith

Hourly pay desired matches what you are able/willing to pay

Conducting an Interview

You’ve narrowed down your search to

a few qualified people to meet. The

goal of the interview is to gain a personal

impression of the applicant, and

decide whether to move forward with

that person. Also, this is a time for

candidates to ask enough questions to

decide if the position is a good fit for

their needs.

Decide whether you want to interview

at home or in a public place. Make the

candidate feel welcome when you first

meet; offer a refreshment, make introductions,

and use small talk to put the

person at ease.Let the applicant read over the job

description while you look over a

resumé or job application. Give her

a chance to ask questions about the

job description, or anything else that

may have come up since the initial

screening.

Once you’re face-to-face with an

applicant, listen as attentively as you

can to everything said (or not said).

Pay attention to first impressions and

never ignore a “gut feeling.” If something

doesn’t feel right, err on the side

of asking too many questions rather

than missing a crucial piece of information.

For example, if an applicant

changes the subject when asked about

a one-year commitment, return to that

question until answered. When I have

pressed that issue, I discovered people

were planning to travel in three months,

or take a break from school. Avoid taking

time to train someone only to have

him leave soon after, not to mention

the difficulty children with ASD often

have in managing changes.

Assessing emotional stability and self-care

The face-to-face interview is your

chance to “go deep,” asking questions

that explore a person’s emotional stability.

Working with a child or young

adult with ASD requires the ability to

stay calm, have patience, and demonstrate

personal maturity. Here are some

key areas to explore. Does this person

“have a life” outside work? Avoid a provider

who looks to meet all her emotional

needs in your household. Ask

about interests, hobbies, etc. to get an

idea of whether the candidate has a

balanced life.

This also includes attention to selfcare.

A solid candidate will have a

regular, healthy routine for managing

stress. It might include fitness, recreation,

yoga, dance, music, artistic

expression, prayer and/or meditation.

Such routines provide greater internal

resources for managing the stressful

times that will arise when supporting

a young person with ASD. Eating habits

are also important. A “junk-food

junkie” might have health problems,

as well as being a poor role model for

healthy eating.

Explore whether your candidate can

define boundaries and set limits. You

want someone who has clear ideas

about what he will and won’t do. Avoid

hiring an employee who doesn’t speak

up and then explodes, or gets burned

out by not honoring personal needs.

Also, it’s most helpful when a provider

can effectively set limits with the young

person being supported. Ask questions

like, “If I ask you to stay later and you

can’t, how will you let me know that?”

or “Tell me about a time you had to say

‘no’ to someone.”

Exploring attitudes toward discipline

The way a candidate was disciplined

as a child will have a direct effect on

how he handles challenging situations

with your child. If he was physically or

emotionally abused, it is essential that

he be able to demonstrate emotional

work done to counteract the negative

effects of being abused.

Explore his ideas about discipline

and how it is best implemented. I look

for someone who interprets discipline

in a positive light, as teaching what

is expected. Contrast this with punishment:

reacting to what the person

has done wrong. Often punishment

includes venting anger in response to

the challenging behavior, rather than

teaching desired behaviors. This is perhaps

one of the most important areas

to thoroughly discuss with a prospective

provider.

Familiarity with ASD

Assess how much the applicant knows

about ASD. Is she familiar with the sensory

processing issues so prevalent for

this population, and too often mistaken

for “bad behavior”? One way to explore

this is to pose a challenging situation

and ask her how she would handle it.

Listen carefully to the response. How

that question is answered indicates to

what extent she grasps the neurological

basis of behavior in this population.

Avoid individuals who assign negative

intent to difficult behaviors. This attitude

is almost never helpful when supporting

people with ASD, and in fact,

can cause great harm.

Sometimes people with a lot of

ASD-related experience rely on old

information rather than current best

practices. For example, do you hear

over-generalizations about individuals

on the spectrum, and/or comments

that underestimate their individual

abilities? This can result in lowered

expectations about what your child

can accomplish. It is far better to hire

someone younger with the right temperament

and attitude who is “trainable,”

than to hire someone operating

with outdated and potentially damaging

approaches.

Red flags

Take care to notice “red flag” items

that could rule out a candidate, such as

omitted personal information (phone,

proper ID, adequate references, etc.).

You should also avoid hiring someone

who doesn’t listen well, or seems too

eager to take the job without asking

any questions about it. I would also

be wary of an applicant who refers to

herself as a “natural caregiver,” unless

I am satisfied that she can set limits

and/or “has a life” outside the work

environment.

Pay attention to anything that doesn’t

feel right to you. Don’t be afraid to

get too personal. Ask more questions,

request additional references, meet

with the candidate a second time – do

whatever it takes to feel at ease.

Never allow desperation to rule your

decision to hire someone. Better to

wait until another candidate comes

along who meets your criteria than

to proceed with a less than adequate

candidate. This person will play an

intimate part in your family life. Ask

questions, insist on a criminal check,

and do thorough reference checks;

anything to protect the well-being of

your child and family.

Then, Reap the Rewards!

Many parents overlook the option

of using in-home providers simply

because they are unfamiliar with how

to hire a quality person. We know,

from experience, that having that special

individual supporting your child

and family far outweighs the effort

required. Your family will be enriched

by the experience, your child will

receive valuable one-on-one attention

and the provider has the chance

to develop a deep, positive connection

with your child and family. It’s a winwin

situation for everyone!

Lieberman, LCSW is a psychotherapist,

national speaker and author of the

book A Stranger Among Us, a guide to

hiring one-to-one providers for children

and young adults with autism. She and

her husband, Craig Ackerson, are blessed

with an 18-year-old son, Jordan, who

has autism. Send comments to at

mailto:atlisa@...

Reprinted with permission, Autism Asperger’s Digest, January/February 2007 issue, www.autismdigest.com

RESOURCES

Listed Below

Support Groups

Activities

Announcements

Conferences

Workshops/Classes

Meetings

Events

BOOK TOPICS

In this issue...

Relationship Issues

Raising Children w/Autism

Sibling Issues

Inspiring Young Adults

Peer Understanding

ARTICLES

In this issue...

After the Autism Diagnosis: Staying Connected as a Couple

by Romaniec

Nobody Survives Alone. The Gift of InterdependenceBy Lieberman

A New Addition to the "Family" Hiring In-Home Support for Individuals on the Autsim Spectrum

By Lieberman

Click here for

Conversation Starter

Flipcards

(Topics include: daily living skills, everyday conversation, home & family, school, things

I like to do and more...)

Click here for

Florida

Parent Support Groups listed by county

Click here for

Learn to Talk About...

Flashcards

(Topics include: games, animals,

household items, nature, toys, play, vehicles and more...)

Click here for

Florida

Social Skills Groups

listed by county

Click here for

Responsibilty

Checklists

for Home & School

Support Groups

Listed Below...

--------------------------------------------

South Florida GFCF/SCD Group

This dietary support group is to assist parents that are seeking to pursue dietary intervention for the treatment of ASD. Mo. meetings include recipies, food saples, & help with shopping & food selection.

3rd Tue, 7p-9p Free.

Whole Foods

7720 s Rd

Plantation, 33324

Contact: Wallitsch

954-349-0609--------------------------------------------

Hernando Autism Parenting & Personal Experience Network

This is a support group for parents & other relatives of children on the Autism Spectrum, as well as for those who are seeking a diagnosis

120 Fountain Ct

Spring Hill, FL3rd Wed 7-9p

Contact: Bolen

352-683-0209

-------------------------------------------

Parents Helping Parents Florida

PHPF Helping Hands support group for parents/families of children with autism & related disabilities. Ocala Last Wed 6-8p, Free

Ocala Public Library, 2720 East Silver Springs Blvd.

Contact: Sylvia

352-624-1360--------------------------------------------

Southwest Florida

Autism Coalition

Monthly support group for parents & professionals facing autism. Topics include Financial Planning, Sensory Integration, Social Skills Training, Communication, & more.3rd Thu, 7-8:30p

At the Pinnacle Academy

6215 Lorraine Rd

Bradenton, FL

Contact: Dr. Kirstina Ordetx

941-755-1400

--------------------------------------------

CAREGIVERS Support GroupThe group will provide support

as well as discussion topics

that are meaningful today

and for planning the future.

MAR-JCC’s Zelcer board room18900 NE 25 Avenue, NMB 33180

Tuesdays, 6–7pmJanuary 4

Wednesdays, 10–11am, on the following dates:January 12, 19 & 26

Open to all, free of chargeFor more information, call:954-749-7230, ext. 118 / @...305-932-4200, ext 135

-------------------------------------------Autism Monthly support group

for those affected by Autism

Various topics & speakers ranging from diet, therapy, & advocacy. 1st Tue

5740 Moog Rd.

Pasco County

Contact: Bice

727-945-0947

--------------------------------------------

Parental Encouragement for Autistic Children Everywhere Our mission is to educate, empower & provide a positive support environment to Families with children on the Autism Spectrum. Lakeland 1st Tue 6p-8p, 1021 Lakeland Hills Blvd. 33805,

Contact:

863-686-1221 ext. 228

--------------------------------------------

Parent to Parent of MiamiParent Resource Center7990 SW 117th AveSuite 201Miami, FL 33183Parent to Parent of Miami is a community parent resource center for families of children and adults with all disabilities. Located in Miami, Florida, our program serves families in Miami-Dade and Monroe counties, as well as the nation. With the help of Parent to Parent of Miami's specialized team, parents and professionals can find information, workshops, and other resources to help make decisions about early intervention, early childhood, education, vocational training, employment, college opportunities, as well as the laws that protect the rights of children and adults with disabilities.Contact: Isabel C. info@...

305 271 9797800 527 9552--------------------------------------------

BFOCASD Support Group for families, educators & therapists

of children & adults with

Autism spectrum disorders

7-9p - Free

1st Wed

First Baptist Church of Melbourne

3301 Dairy Road

West Volusia, FL

321-727-1028

--------------------------------------------Aware 4 Autism- Support group

for all people affected by autism & the autism spectrum.

Speakers monthly. 1st Sat 2-4p. First Congregational Church, 7900 Fort King Rd.-, Zephyrhills

Contact: Johanna O'Toole

813-782-9431

--------------------------------------------

Call for Articles

ARCOFSF

is currently looking for article submissions for their February 2010 Newsletter.

Topic:

Growing Up with Aspergers/Autism

Articles may be written by someone with Aspergers/Autism, parents of an adolescent with Aspergers/Autism or professionals that work with adolescents with Aspergers/Autism.

Please paste all text directly into your email.

(Do not send your article

as an attachment.)

We look forward to hearing your unique perspectives.

You may also submit any free:

Autism Support Groups, Activities, Announcements,

Conferences, Meetings, Events,

and Workshops/Classes

Submit all info to:

AutismResourceSF@...

(Be sure to include your contact phone number, event address, county, event date(s), and email.)

-----------------------------------

Advertise

with us!

Reach nearly 5,000

families, service providers & individuals affected by Autism

Click here to learn how.

--------------------------------------------

Activities

Buddy Baseball RegistrationBuddy Baseball, a recreational league for kids with special needs playing ball with the assistance of a “Buddy” if needed will be starting its next season on February 5, 2011. Registration is now open until January 21, 2011. All games will be played on the softball fields at the Temple Terrace Recreation Complex. Player ages, 8 - 18. Buddy ages 10 -18. $45 registration for players with special needs, no charge for the buddies. Meet and Greet - 2/5/2011. Season 2/12/2011 - 3/19/2011.

Contact: Russ Oberbroeckling

(813) 416-5742 buddybaseball@...

--------------------------------------------

'Playdates' Support Group

This time has been reserved for our support group members who have children on the spectrum only.Tampa 3rd Tue 6p to 8p, $6 per child Come Join Us at Gator Fred's Party Center! West Village Commons 5360 Ehrlich Rd. 33625.

Contact:

Kim Larochelle

Marilyn Santiago

813-935-4744

Announcements

Free Autism Screening

For Toddlers

The Children’s Hospital of Southwest Florida in Lee County, in partnership with the Mc House Charities® of Southwest Florida, offers a free monthly autism spectrum disorder screening for toddlers 18 months to 36 months of age.

The ASD screening is conducted by the Neurosciences Center at The Children’s Hospital, under the guidance of pediatric neurologist Colon, MD, MPH, and pediatric psychiatrist nne Krouk, DO. The screenings are administered by an Advanced Registered Nurse Practitioner, who has extensive training and experience in typical child development and developmental disorders.

A physician referral is not required. To schedule a screening, please call 239-985-3608.

--------------------------------------------

Free Autism Screening

15 Months through 4 years of age

Face Autism, Inc. is providing free autism/ASD screenings to children 15 months through 4 years of age, in Sarasota/Manatee/Charlotte counties who show signs of autism/ASD.

The screenings will be performed by a certified Infant Toddler Developmental Specialist / certified Floortime Therapist. The tool used for the screening will be the Autism Diagnostic Observation Schedule (ADOS). If a child is at risk for autism/ASD, they will then be referred back to their pediatrician, pediatric neurologist, child psychologist, or developmental pediatrician for further evaluation/diagnosis. Early detection leads to early intervention.

Don’t wait and see. For more information call 813-240-3044.

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FW: January Monthly Newsletter: Autism: Family Issues & Relationships

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