Autism: Why I Love Kids with Autism by Doris Duan-Young, eBook 2014; an Extended Review with < My Thoughts > by Sara Luker
Excerpts from the book – (13% indicates location in the Kindle version of the book, instead of page numbers).
< Excerpts from the book – >
13% When my son Norden was four years old he began to exhibit some concerning behaviors. I was worried. Even with all my experience I went through all the stages of uncertainty, denial, and worry that I had seen other mothers go through.
Norden’s situation wasn’t extreme, but it was concerning.
My entire professional life has been immersed in learning how to help kids, and how to help their parents. That’s what “behavior analysts” do. At the simplest level we analyze behavior and create a plan to create new behaviors. At the deepest level we become part of the family.
4% The most valuable thing I can share is my perspective. I’ve had a lifetime of experiences and witnessed the transformation of thousands of children.
I began my career working in the field as a behavior analyst. After the company I worked for filed for bankruptcy, I decided to start my own company, with my husband Samuel.
That was 1999. We started in our kitchen, just the two of us. After 20 years and helping over 20,000 families, we have autism centers worldwide.
My highest core value is unconditional love. I know that anybody reading this book will know that this book is written from the heart.
I understand children are so much more than the labels we put in front of them. I understand that children who are diagnosed with autism are far more than just “kids with autism.” They’re artists, athletes, and dancers. They’re friends. They’re multi-faceted just like the rest of us. I truly understand.
6% There is always a reason for hope. No matter what your situation now, it’s not as bad as you think. No matter where you are now in life, I can assure you one thing. You’re going to have some of the best days of your life, and some of the worst. The trick is knowing which is which.
Parents of children who’ve been diagnosed being somewhere on the autism spectrum only have a sample size of ‘one child’ to learn from.
< My Thoughts > “…only one child to learn from.”
In her book Doris explains that she opens group homes with a family setting model. The children are under the supervision of experienced practitioners who follow her program. Each child living in her home has an individual plan designed specifically for them. In order to know how to best address these severe behaviors, trained professionals develop systematic and descriptive behavioral assessments, functional analyses and intervention methods to help the child make positives changes in his or her behavior. This is a process which may take many months, even a year or more to accomplish. Autism is a lifelong diagnosis, but with successful intervention many children go on to become productive adults.
6% What you’re about to read in this book are some of those stories of transformation. Stories about children like Janey, a vibrant 9-year-old girl who went from 300 violent acts per month to being a beautiful 20-year old woman, engaged to be married. Stories about kids like Leon, William, Shawn, Olivia, Debi, and Aimee.
These children are my inspiration. Seeing the joy in their faces is why I get up early and go to bed late every day.
7% This isn’t some new age, psycho-babble, feel good strategy. This is science. Helping the parents first is part of the strategic plan to help the children. Think about it.
Here’s how I look at it. ‘Dis-abled’ means some ability has been removed or negated. Most children who are referred to as ‘disabled’ aren’t ‘dis-abled’ at all. A child who is born blind doesn’t have the ability to see. He also doesn’t have the ability to fly like a bird or breathe under water like a fish. All he has are abilities.
My job is simple. It’s to help the child develop more abilities.
Once you’re in a resourceful state then you can regain your ability to act effectively. You will no longer be disabled by your own emotions.
< My Thoughts > “You will no longer be disabled by your own emotions.”
Ben-Itzchak, E. et al. (2016) talk about the importance of understanding ones own emotions and the importance of developing ‘empathy’. They found that many people who have a low degree of self-awareness may have difficulty identifying ‘happiness’ and ‘fear’ emotions, as well as feeling ‘empathy’.
Zhou & Yi (2014) believe that parents and caretakers of a child with ASD, who report consistent negative emotions, enter into a vicious cycle. While those who are influenced by positive parenting and perform relaxation techniques find that their child is more relaxed, shows fewer symptoms, and makes greater progress.
8% Your life probably isn’t exactly the way you want it right now. There’s a gap between where you are and where you want to be.
The simplest, fastest way I can help you close that gap is by sharing with you the values that have worked for thousands of people I’ve worked with over the last twenty years. These are the values that have worked for parents even when they thought they already tried everything and their situation was hopeless.
9% If parents aren’t aware of the core values that will give them the best success with their child, any tactics and strategies they try probably won’t be effective long-term, if at all. And if they aren’t even aware of basic strategies and tactics, they will wind up frustrated, overwhelmed, exhausted and often angry.
Angry at their child, the world, society, God, and most of all, themselves.
That’s why when I help parents of children with autism I always begin with shaping their values. Why? Because values are the foundation from which to build long-term, lasting results.
The best way I found to share these concepts is through stories.
< My Thoughts > " I always begin with shaping their values.”
“Shaping behavior’ is a technique that came from behaviorism, a field of psychology established by B.F. Skinner based on the relationship of behaviors and their reinforcement of preferred items such as food or praise.” Retrieved from www.thoughtco.com/shaping-a-teaching-technique.
Bodfish (2004) tells us that there is ‘empirical’ support for interventions which include three pivotal parts – (1)teaching & reinforcing alternative behaviors (2) environmental arrangement or structuring (3) shaping or graded change.
‘Shaping behavior’ is different than managing ‘misbehavior’. Instead, ‘shaping behavior’ is structuring activities to reflect a desired outcome. Some use ‘social stories’ or ‘video modeling’. (www.DorisDuanYoung.com/AutismApps ).
“Social stories are simple stories (a created one-page, age-appropriate-reading-level story with pictures), that helps students learn about appropriate social behavior.” You may write your own stories or find them ready-made online. Retrieved from: http://www.teachhub.com/social-stories-autistic-students.
“Video modeling is a visual teaching method that occurs by watching a video of someone modeling a targeted behavior or skill and then imitating the behavior/skill watched.” Retrieved from: http://www.watchmelearn.com/video-modeling/what-is-video-modeling
10% All parents want their children accepted and thought of as any other children. They want their children to be respected. They want their children to feel happy and good about themselves. Some even consider the term “autistic child” insulting…
< My Thoughts > “They want their children to be respected. They want their children to feel happy and good about themselves.”
Sometimes those ‘living’ with autism feel that parents/society refuse to accept them the way they are. Instead of embracing their differences parents/society set about trying to make them ‘normal’. This is not always the case. Many parents just “…want their children to be respected. They want their children to feel happy and good about themselves.”
17% The stages of grief are used to describe what people go through when somebody close to them dies.
Nobody died. Those children and families are still there, needing help. They didn’t disappear off the face of the earth.
< My Thoughts > “Nobody died. They didn’t disappear off the face of the earth.”
Many authors refer to Elisabeth Kubler-Ross’ “5-stages of grief” – denial & isolation, anger, depression, bargaining, and finally acceptance. Sicile-Kira (2014) explains that “Whether a young child who seems normal and later ‘slips’ away into autism. Or, the infant not meeting developmental milestones, the emotions that a parent goes through are ‘like’ these. But instead of reaching each stage chronologically, parents of children with autism experience them on a continual cycle… going through different stages at different times.”
“Parents never completely graduate out of these stages; just learn to spend more time in the ‘acceptance’ phase. Parents are experiencing the loss of their fantasy child, the one they had hoped and dreamed about.” “Parents can use the stages of grief to energize themselves to fight for the child’s right to a bright future.”
19% Autism is a label that’s used in the real world to help make it easier to identify and treat certain people who have identifiable behaviors that they might want to change, or improve upon. There are a wide range of behaviors that fall under the Autism Spectrum.
This is all necessary medical terminology that’s used in diagnosing patients. It’s necessary because insurance companies, medical providers, and public sector organizations need a way to systematize the way in which people receive help, and how that help is paid for. That’s part of the business of autism.
< My Thoughts > “…medical terminology that’s used in diagnosing patients. That’s part of the business of autism.”
Your child’s most valuable records may be those which reflect his or her diagnosis as designated in the current Diagnostic & Statistical Manual of Mental Disorders, simply known as DSM-V. Edition ‘V’ no longer refers to Asperger’s as separate from Autism Spectrum Disorder (ASD), but is noted as a ‘degree’ of ASD.
For instance, your child’s autism may be gauged by professionals as ‘#1 (low), #2 (moderate), or #3 (severe)’ in Social & Communication,
and/or ‘#1 (low), #2 (moderate), or #3 (severe)’ in Restrictive, Repetitive Behaviors (RRB’s).
It is very important that your child’s diagnosis reflects what s/he ‘looks’ like according to the DSM-V. With the ‘Asperger’ designation removed… many in the Asperger community feel that they have been negatively relegated to a ‘lower’ order of autism.
Bogdashina & Casanova (2016) relate that “the May 2013 fifth edition of the DSM-5 contained helpful changes in the diagnostic criteria of ASD, including the introduction of ‘sensory symptoms’, for example, hyper-reactivity or hypo-reactivity to sensory input. Hyper-reactivity is described as an unusual interest in sensory environment; excessive smelling or touching objects; and fascination with lights or spinning objects. Hypo-reactivity is the apparent indifference to pain/heat/cold; adverse response to specific sounds or textures.
Davide-Rivera (2015), herself diagnosed with Asperger’s, explains that adults with autism experiencing sensory disorders may display (under) hypo-responsive sensory seeking behaviors in some areas, while at the same time exhibiting (over) hyper-sensitivities in other sensory areas. Their environment needs to be adjusted in order to make them comfortable and less reactive.
21% We all live under the illusion that once we achieve our goals we can then, and only then, be happy.
Instead of hoping their son or daughter gets into Harvard, they’re now hoping he or she will just learn how to get through the day without throwing a tantrum in public.
What’s the cure for this? Two words – unconditional love.
< My Thoughts > “…unconditional love.”
Parent and author Kerry Cohen (2011) speaks of unconditional love… “If Ezra weren’t who he is, if I didn’t love him with that fierce animal love we feel for our children,” I might see a disabled child and think… how sad. “I want Ezra and Griffin to know that they don’t have to do anything to be loved. They don’t have to be anything other than who they are. That no matter what happens, no matter what they do or say or become, I will always love them…”
21% It’s impossible to love somebody and judge them at the same time. It’s impossible to love somebody and be impatient with them at the same time. It’s impossible to love somebody and be angry with them at the same time.
I learned this from ‘My Kids’. Kids who were dropped off at my group home like Janey, William, Leon and Debi.
Those four beautiful souls whose behaviors were so problematic that they couldn’t live in their own homes taught me, reminded me, that the solution to every problem isn’t solving the problem. It’s appreciating the journey, celebrating the progress, and experiencing being in a state of unconditional love every step of the way.
22% When I first met Janey in 2001 she was 8 years old and she averaged over 300 violent, aggressive acts a month. She had been adopted by her mother, Yolanda, when Janey was just 3 months old. Janey was thrown out of every pre-school she attended. The morning of January 10th I was on my way to the mall to get,now 20 years old Janey, an engagement present.
24% When Janey first arrived she was dressed in a sparkly, pink shirt and green Capri pants. Her hair was dark brown, and very curly. Janey’s mother Yolanda, stood in the doorway with Janey standing nervously beside her.
This was it. The day we had been waiting for. I greeted Yolanda, Janey, and her brother. This was going to be a new adventure for all of us.
One thing that struck me about Janey, after getting to know her and spending so much time with her, is how much she appreciated even what seemed like the smallest things in life. Yes, she would get frustrated and violent. We had strategies and the will to help her with that.
But what we could never teach was the pureness in her heart, the appreciation, the sense of wonder that Janey had about life.
Janey loved and enjoyed each moment. A butterfly might land on a nearby flower, and Janey would sit and stare with amazement and joy every time, even if it was the 100th butterfly she saw that week.
Sometimes when the other children would be upset, Janey would comfort them. Being totally present in the moment, appreciating her friends for who they were, not judging them for their inconvenient behavior.
Every night at dinner Janey would say thing like, “This is the best spaghetti I’ve ever tasted,” even if it was the 5th time we had spaghetti that month. Every bedtime story was the best she had ever heard.
Of course there were times when Janey did things that required us to intervene. Sometimes the interventions could appear harsh from an outsider’s view. One night in a restaurant we had to use a “mat wrap” to calm Janey down, and keep her from hurting herself, or others around her.
A “mat wrap” is like a yoga mat. When a child is so out of control that nothing else can be done to calm the situation, the mat is wrapped around the child like a blanket. Then we just hold the child until he or she calms down.
< My Thoughts > “mat-wrap”
Most children with autism and sensory processing issues are calmed and comforted by the deep pressure of being wrapped. Children with sensory issues respond to weighted blankets filled with the same kind of poly-pellets used in Beanie Babies. The ‘mat-wrap’ seems to create the deep pressure which calms and comforts the over-stimulated child or adult.
In addition to the ‘mat-wrap’, there are several crisis management ‘escort and therapeutic holds’ which are safely used for both the child and the adult. These ‘holds’ may be needed to meet a person’s needs, move them to a safe location, or prevent them from hurting themselves or others.
Schools, group homes, and other care facilities are subject to rules and regulations regarding ‘mat-wrap’ use. Individual states have laws to protect citizens from ‘restraint and seclusion’. Medicare, www.Medicare.gov cautions the client/patient has the right to take part in developing their health care plan, including a ‘say’ as to whether chemical (medication) and/or physical restraints will be used or not.
Parents also have the right to state in a letter what the ‘institution/facility’ has permission to use as their child’s behavior intervention protocol. Parents – Be careful not to sign away those ‘rights’ in documents you may rush to sign, in order to place your child into a public or private school or facility. Just saying.
24% This is why doing things from a place of love, not frustration or anger, is so important. Janey knew that we were helping her calm down. She fought us tooth and nail at times.
There’s no magic pill that’s going to take a child from 300+ violent acts per month to zero. It’s a gradual learning process.
Janey understood this. She never held a grudge. She could always sense that we were there to help her.
What she didn’t realize was how much she was helping us. Every day seeing the joy in Janey’s face when she made the smallest steps of progress was an inspiration.
Janey walked over to Aimee and put her small right hand on Aimee’s much larger back. Janey had no fear. Aimee continued to rock back and forth on her bed, and sob.
36% It’s okay, it’s okay, Janey repeated over and over as she gently rubbed Aimee’s back. Each kind word said by Janey seemed to deflate Aimee’s anger, like the air slowly leaking out of a balloon.
Compassion. Understanding. Empathy. Unconditional love. These are all things we’re taught that we must have when working with children with autism.
< My Thoughts > Compassion. Understanding. Empathy. Unconditional love.
Greene (2016) asks us that “Out of all the qualities on the more positive side of human nature, which ones are the most important? Which ones do we most urgently need to model and try to make sure that our children acquire? Acts of compassion and empathy.”
“Sometimes our adult energy, effort, and persistence in ensuring that our expectations are met make it harder for the child to meet that expectation.” Fatigue and frustration sometimes cause parents to forget that collaborative partnering with kids to solve their behavior-causing problems will achieve more success.
36% It’s easy to teach that we’re supposed to have these qualities, but it’s impossible to teach somebody to take on these qualities.
Unconditional love, understanding, and compassion are things that the children in our group home had for each other. They were a family. They had each other’s backs. They had an unspoken bond that transcended the tears, the outbursts, and their daily struggles.
It took months, but once Janey realized that she knew her left from her right, and that she could cross a street safely looking both ways, she was overjoyed. It was like she hit the lottery every time she accomplished something that to adults would seem small.
Sure, Janey could become upset easily. What amazed everybody about Janey, and about all the kids at our home, was how easily they could be happy. How easily they laughed and smiled. How easily they loved and cared for each other.
25% “If only you’d believe in miracles so would I…” That’s one of the biggest gifts the children have given me. It’s like they have a sixth sense, an appreciation for the miracles that are around us all the time. Some people spend their entire lives chasing their dreams and never once experience the pure joy for simple things in life that Janey did, and still does, on a daily basis.
I knew whatever I choose Janey would love it. She knew that the gift was just a token of what came from my heart. Life is so much easier when you see everything as a gift.
27% Debi was the complete opposite in personality to Janey. Where Janey was the whirlwind that made a grand entrance (and sometimes exit) to every scene, Debi was quiet and introverted. Debi didn’t say much. She was what some people may describe as a “high functioning” autistic child.
But she still had problems that she needed to overcome. Serious problems.
< My Thoughts > “Serious problems.”
Serious problems may occur when the child with ASD is transitioning from one activity, location to another, or across settings. The main goal is to defuse and deescalate these dangerous behaviors for the safety of the child and the caregiver.
Matson & Rivet (2007) discuss the seriously challenging behaviors which impede learning and compromise the child or adult living and learning in more independent settings; such as family or group homes and public schools. They describe the challenging behaviors as ‘self-injurious behavior’, ‘aggression & destruction’, as well as ‘seriously disruptive behaviors’.
Self-injurious behavior – Harming self by poking, hitting, pinching, hair pulling, scratching and other behaviors.
Aggression and destruction – Kicking and throwing things, severely banging, hitting and yelling at others.
Seriously disruptive behaviors – Defecating, urinating and removal of clothing in public, running away from caregiver, repeated inappropriate vocalizations and body movements.
27% There were times she’d become frustrated, even violent. Most of the time her outbursts would be directed towards inanimate objects, like her bedroom furniture. Debi was above average in size and strength. It didn’t take much effort for her to destroy a piece of furniture.
Debi’s frustrations often came from being frustrated about not being able to complete what most children her age would consider simple tasks – like spelling her name correctly.
Whenever Debi was successful we’d give her a “reinforcer,” something as simple as a gold star on her chart. Over my 20 years as a behavior analyst, and my 8 years as a parent (and as a wife!) I can tell you there’s nothing more powerful and rewarding than giving the people you love positive reinforcement.
And remember what it is like to be a ‘fun-loving’ kid. Better yet, unconditional love makes it almost impossible to judge or blame your child when their progress isn’t living up to your expectations. (Know the quickest way to go from frustrated to happy? Change expectations to ‘positive anticipation’. Works every time.)
Allow that unconditional love to flow from you to the people you love the most.
Debi was a very gifted artist. For whatever neurological reason her gift for art didn’t translate easily into reading or writing. Her verbal and language skills were not at an effective level when she arrived at our group home.
Our mission, our passion, is to identify those areas where a child’s skills and results may need some help, and then do everything we can to help them learn how to do things most people would consider simple.
More importantly, we’d help them do things that would allow them to become independent and “functional” in the outside world.
< My Thoughts > “…become independent and “functional” in the outside world.”
Back in the day, when Sonny was in an institutional setting, he was an eloper and inflicted injury to anyone who stood in his way. I have since figured out that he was running to try to stop his frequent and scary seizures. But, the only way his caregivers could deal with taking him into the outside world was to harness him in a wheelchair. True story. He spent his school days in, and was transported in a wheelchair for ‘containment’.
27% For months Debi struggled with learning how to write her own name. Debi is not a complicated name. Debi’s last name is only a little more difficult than her first name. We would practice with her daily. And daily Debi struggled. It’s our job to keep her moving forward, reinforcing event the smallest steps of progress.
Even with this constant reinforcement Debi struggled. We would help Debi work through the struggles, whatever it takes to get results.
It was Debi’s 10th birthday. I had stopped by the store to get her a small gift and a card, when the director of our home called me. She said Debi had a present for me.
28% I was excited walking up to the door, but I had no idea what was about to happen, and how it would change my life. As soon as I opened the front door I heard Debi’s voice call out to me. “Miss Doris! Miss Doris! I did it! I did it!”
Debi practically jumped into my arms trying to show me the piece of paper. There it was, in big block letters. DEBI JEAN.
Debi had finally learned to write her own name. When I think back to that moment, and so many other like it, I get tears in my eyes. Happiness = Progress.
31% Life becomes a joy when you know that you’re going to celebrate something every day. The secret is making it easy to feel happy.
< My Thoughts > “Life becomes a joy when you celebrate something every day.”
Sicile-Kira (2014) “Tip for parents: Celebrate and cherish each and every one of these moments. Tuck them away and pull them out on the days when you feel bleak and could use some hope. These are the moments that make you feel that life is good. Treasure them, and share them with those who have shared your sorrows so they can also share in your joy.”
31% If you set your life up to make it easy to celebrate and be happy no matter what’s going on in your external world, not only will you be less stressed and happier you’ll make everybody around you feel better. Especially your kids.
And when your kids feel better, they’ll make more progress. My belief is that the fastest way to be happy is to turn expectation into appreciation. And the best part? Everybody is happy and feeling better while your kids are making progress.
34% Being smart is learning how to effectively and efficiently produce results. As a behavior analyst I look for cause and effect relationships. It’s my job to discover, like a detective, the direct cause (antecedents) of disruptive behaviors.
Almost every local or state government in the United States has a family agency to intervene on behalf of children. Many people don’t realize that there are thousands of families with children whose behavior is so disruptive that the desperate family contacts the local government office for help.
< My Thoughts > “…every local or state government in the United States has a family agency to intervene on behalf of children.”
Find out the lead agency for your State at the ECTA Center: http://ectacenter.org/contact/ptccoord.asp
Historically, families bore children to share and enhance the workforce and to care for parents and grandparents as they aged. The first child welfare services program were created as part of the Social Security Act in 1935. Family preservation and support did not become Public Law until 1993. Family preservation and support did not become law until 1997. Shocking as it may seem.
States receive funds from the federal government to deliver human services that emphasize counseling, family preservation, family intervention, advocacy and education. The Office of the Attorney General in your state offers parents, grandparents, and guardians help with a variety of issues; as well as a list of community service agencies to contact.
34% What happens with many disruptive children and teenagers is that the case workers from these government agencies have no choice but to detain these children in what amounts to a jail. There is no choice because some of the children are so aggressive they are a risk to themselves and their own family members.
The problem is that these children will only get worse, no better if they are put into a detention center. That’s why the Florida Office of Children and Families asked me to open a group home for some of these children. They knew that I could help the children better than a government agency.
< My Thoughts > “…group home…”
Only after we were able to bring Sonny home as a foster child, did he respond to toilet training. He was 13 years old.
35% Aimee had recently come to live in our group home. Unlike Debi and Janey, Aimee was not able to verbally communicate. Her language skills were not developed.
First the bed clothes were ripped off the bed. The sound Aimee let out was like something you’d imagine a wild animal would make. Next, the mattress came off the bed.
When Aimee became frustrated, or when she wanted something and didn’t know how to express herself, she would do the only thing she knew. She would become physically violent and destroy whatever was near her.
From a behavioral analyst’s point of view, every behavior has a function, or intent. One of the ‘mistakes’ parents make when children calm down after a tantrum is ask them “Why did you do that?” “Didn’t I tell you that you’re not supposed to do that.” “What’s wrong with you?”
< My Thoughts > “What’s wrong with you?”
From Mad in America.com, “What’s wrong with you?” by Michael Cornwall, PhD tells us that, “We are all capable of having any of the range of human emotional experiences, to any degree of intensity. They are formed by what happens to us and how our needs get met or not met.”
According to Greene (2016), “You shouldn’t be asking the “why” question very often.” “I learned a long time ago that the adult jumps to the conclusion that the child knows the motivation behind their behavior.” When seeking clarification ask instead, “So, help me understand what happen…” Or, “I noticed that you seem to have trouble with…” “What’s up?” Then the parent can ‘repeat’ what is heard in order to further clarify ‘why’ the child did what they did.
“Okay, so I think I understand now. Maybe we can figure out what to do so that won’t happen again. Do you have any ideas?” Greene cautions that parents shouldn’t do ‘all’ the problem solving, but let the child identify what’s happening and how to deal with the emotions or sensations they are experiencing; using whatever communication methods they need to accomplish this.
35% Many children with autism have never developed the ability to communicate effectively with words or language. They have learned to communicate physically, often with rage and anger.
Aimee began her tantrum that night in the living room in front of all the other children who lived in the home, including Janey. Unlike Aimee, Janey was highly verbal when she came to our home… in fact she swore like a sailor.
Jane watched intently as Aimee was lead from room to room. I’m sure Janey could relate. There were many times when Janey had to be physically constrained in what we call the ‘mat wrap’.
Aimee was older and much larger physically than Janey, but she was at a much lower level in her emotional and functional development. Janey treated Aimee like her little sister.
40% William was a very small, cute, typical looking 6-year old. By looking at him nobody would know he was autistic. Amber and Adam also had a 2-month old baby daughter. Their world was already being turned upside down every day by William.
He was a miniature version of his dad. Very slender, almost timid looking. Looks can be deceiving.
When William had trouble communicating he would become aggressive, even violent. When his baby sister was born William escalated both the intensity and frequency of his outburst. The target? His baby sister, Emily.
Leaving Emily unguarded for even a few seconds could result in William doing serious physical harm to his sister.
41% One of my monk friends says, “You can’t love somebody and judge them at the same time.”
He’s right. I watch my kids exemplify that every day.
The rest of the world is not like that. One of the biggest things parents of children with autism deal with is fear of judgment and ridicule by the outside world.
Many parents won’t even take their children to the supermarket, not because the kids act out, but because they fear the condemning stares of total strangers.
41% When I told Amber that it might take a year for William to learn new behaviors to replace what we call his “maladaptive” behaviors she began to cry again. She said, “He’s so small. He’s still my baby.”
“I’ve got this, Amber. He’s my baby now, too,” I told her.
42% Yes, the kids have autism. That’s part of who they are. When they make progress they don’t change from kids with autism to kids without autism. That’s not how it works.
< My Thoughts > “they don’t change from kids with autism to kids without autism.”
Bodfish (2004) examines how “deeply” established treatments impact the range of symptoms that are expressed in autism within each domain area. He says, “Research has indicated that social skills appear to be pivotal responses that, when trained, can lead to improvements in other non-targeted symptoms of autism, such as verbal and nonverbal communication.”
“While autism is undoubtedly a brain disorder, the neurobiological basis of autism remains to be identified.” “Look for successful interventions for overt behavioral symptoms such as hand flapping, body rocking, object spinning, obsessionaly restricted interests and poor response to novel or new interests.” Finally, he cautions that interventions cannot be successful when operating in a vacuum. Parents shouldn’t be lead into the false dichotomy of “pills” without “skills”… never one without the other.
42% Instead, they change like tiny circles growing into larger spheres. Or, tiny squares growing into larger cubes. Or, tiny triangles growing into larger pyramids.
Their change is not superficial; it’s a three-dimensional expansion of who they are.
They become, daily, the best they can be. Like their relationships with each other, their transformation isn’t superficial, it’s deep and lasting.
Eight months after William was dropped off at our group home, Adam and Amber were back. They brought Emily, who was about to have her first birthday. This time they came to take William home. I feel so blessed to do what I do.
43% Redefining patience. Communication comes in many forms. Communication is a two-directional process. There is the person sending the message and the person receiving the message.
More often than not there is some essence of verbal communication that gets lost in the transformation of thoughts into words. Words are just symbols that make communication faster and easier, but not necessarily more effective.
Kids with autism fall somewhere on the verbal scale of communication. Some are what we refer to as verbal, other non-verbal. All are effective communicators at some level. We just need to listen with our hearts, and only then our eyes and ears. We’re so used to verbal communication that sometimes we don’t remember that our most primal communication is non-verbal.
55% The biggest million dollar secret is this: Being happy in the moment is what will also help you, and your child, make the most progress. It’s a win-win situation. I would never tell anybody what to believe spiritually, but if there is a God who created this world, wouldn’t it make sense that this is how life was supposed to work? Being happy is always good.
56% I thought back to all the children over the last 20 years that I’ve had the privilege to meet. During all those years of spending time with so many children and helping them accomplish so many things, I forgot to focus on all the gifts they had given me.
They’ve given me the gift of watching them be so happy and appreciate the ‘little’ things in life, to realize those ‘little’ things like marveling at the beauty of a butterfly were probably more important than the ‘big’ things I was focused on.
They’ve given me the gift of celebrating small victories and even small ‘defeats’ knowing that each moment is a new beginning no matter what’s led up to that moment.
Most of all they’ve given me the gift of unconditional love, and the desire to share all these gifts with you, and the hope that you will share these gifts with those who’ve been guided to cross your path. With the deepest love and respect, Doris Duan-Young.
58% In answer to some questions –
What do behavior analysts do? We are research oriented professionals who study the behavioral influences in the patient’s environment, then they work towards a solution; sometimes involving medication. Medication may involve improving current behavior in order to adopt an appropriate replacement behavior, depending on the patient’s condition.
57% Through applied behavior analysis (ABA), psychologists apply their experimental knowledge to people in order to objectively modify the actions of the individual. It is highly beneficial in numerous fields such as educational development and business management.
64% Autism Apps – One of the things we do as behavior analysts is to provide positive reinforcement for the children. The world of technology is expanding exponentially, giving us a tool with which to do this. Visit http://www.DorisDuanYoung.com/AutismApps for more!
90% Hypothetical behavioral intervention plan – to give you an idea of how the behavioral analyst begins working with your child. You would gather background information, including anecdotal incidences showing the behaviors targeted for deceleration. For example physical aggression to self and others. Elopement such as leaving a safe area and escaping into a dangerous area like a busy street. Verbal aggression like threatening harm to others. Tantrum behavior which can escalate to dangerous behaviors. Inappropriate sexual behavior such as taking one’s clothes off in public.
After the antecedents are identified then functional replacement behaviors are taught. When the child complies then identified reinforcers are offered. This is where the autism apps come in. Also, the child may like TV, DVDs, going somewhere special, listening to music, getting special attention from others, etc.
< My Thoughts > At this point an individualized program is created for the child and a staff and schedule is selected to implement that program. This includes follow-up evaluation, shaping and fading after the child has reached their goals. Not as easy as it sounds, but with consistency and unconditional love, it works.
End of excerpts from book, with < My Thoughts >
================
References used in < My Thoughts > are:
Ben-Itzchak, E., Abutbul, S., Bela, H., Shai, T., Zachor, D. (2016). Understanding One’s Own Emotions in Cognitively-Able Preadolescents with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.2363 - 2371.
Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet?; Mental Retardation & Developmental Disabilities Research Reviews; Chapel Hill, NC V10:318-326.
Bogdashina, O. & Casanova (2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; Seal Press Publishers, CA.
Davide-Rivera (2015). Symptoms of Sensory Procssing Disorder (SPD) in Autistic Adults. Autism Answers, Autism Behaviors Part II: Hypo Reactivity.
Greene, R. (2016). Raising Human Beings: Creating a Collaborative Partnership with Your Child; Scribner Publishers, NY.
Matson, J., Rivet, T. (2007). A Validity Study of the Autism Spectrum Disorders – Behavior Problems for Adults Scale; Journal of Developmental & Physical Disabilities; 19,p.557-564.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism;
New York, New York: Penguin Random House Company.
Zhou, T., Yi, C. (2014). Parenting Styles & Parents Perspectives on How Their Own Emotions Affect the Functioing of Children with Autism Spectrum Disorders; Family Process, Vol. 53:1.
Excerpts from the book – (13% indicates location in the Kindle version of the book, instead of page numbers).
< Excerpts from the book – >
13% When my son Norden was four years old he began to exhibit some concerning behaviors. I was worried. Even with all my experience I went through all the stages of uncertainty, denial, and worry that I had seen other mothers go through.
Norden’s situation wasn’t extreme, but it was concerning.
My entire professional life has been immersed in learning how to help kids, and how to help their parents. That’s what “behavior analysts” do. At the simplest level we analyze behavior and create a plan to create new behaviors. At the deepest level we become part of the family.
4% The most valuable thing I can share is my perspective. I’ve had a lifetime of experiences and witnessed the transformation of thousands of children.
I began my career working in the field as a behavior analyst. After the company I worked for filed for bankruptcy, I decided to start my own company, with my husband Samuel.
That was 1999. We started in our kitchen, just the two of us. After 20 years and helping over 20,000 families, we have autism centers worldwide.
My highest core value is unconditional love. I know that anybody reading this book will know that this book is written from the heart.
I understand children are so much more than the labels we put in front of them. I understand that children who are diagnosed with autism are far more than just “kids with autism.” They’re artists, athletes, and dancers. They’re friends. They’re multi-faceted just like the rest of us. I truly understand.
6% There is always a reason for hope. No matter what your situation now, it’s not as bad as you think. No matter where you are now in life, I can assure you one thing. You’re going to have some of the best days of your life, and some of the worst. The trick is knowing which is which.
Parents of children who’ve been diagnosed being somewhere on the autism spectrum only have a sample size of ‘one child’ to learn from.
< My Thoughts > “…only one child to learn from.”
In her book Doris explains that she opens group homes with a family setting model. The children are under the supervision of experienced practitioners who follow her program. Each child living in her home has an individual plan designed specifically for them. In order to know how to best address these severe behaviors, trained professionals develop systematic and descriptive behavioral assessments, functional analyses and intervention methods to help the child make positives changes in his or her behavior. This is a process which may take many months, even a year or more to accomplish. Autism is a lifelong diagnosis, but with successful intervention many children go on to become productive adults.
6% What you’re about to read in this book are some of those stories of transformation. Stories about children like Janey, a vibrant 9-year-old girl who went from 300 violent acts per month to being a beautiful 20-year old woman, engaged to be married. Stories about kids like Leon, William, Shawn, Olivia, Debi, and Aimee.
These children are my inspiration. Seeing the joy in their faces is why I get up early and go to bed late every day.
7% This isn’t some new age, psycho-babble, feel good strategy. This is science. Helping the parents first is part of the strategic plan to help the children. Think about it.
Here’s how I look at it. ‘Dis-abled’ means some ability has been removed or negated. Most children who are referred to as ‘disabled’ aren’t ‘dis-abled’ at all. A child who is born blind doesn’t have the ability to see. He also doesn’t have the ability to fly like a bird or breathe under water like a fish. All he has are abilities.
My job is simple. It’s to help the child develop more abilities.
Once you’re in a resourceful state then you can regain your ability to act effectively. You will no longer be disabled by your own emotions.
< My Thoughts > “You will no longer be disabled by your own emotions.”
Ben-Itzchak, E. et al. (2016) talk about the importance of understanding ones own emotions and the importance of developing ‘empathy’. They found that many people who have a low degree of self-awareness may have difficulty identifying ‘happiness’ and ‘fear’ emotions, as well as feeling ‘empathy’.
Zhou & Yi (2014) believe that parents and caretakers of a child with ASD, who report consistent negative emotions, enter into a vicious cycle. While those who are influenced by positive parenting and perform relaxation techniques find that their child is more relaxed, shows fewer symptoms, and makes greater progress.
8% Your life probably isn’t exactly the way you want it right now. There’s a gap between where you are and where you want to be.
The simplest, fastest way I can help you close that gap is by sharing with you the values that have worked for thousands of people I’ve worked with over the last twenty years. These are the values that have worked for parents even when they thought they already tried everything and their situation was hopeless.
9% If parents aren’t aware of the core values that will give them the best success with their child, any tactics and strategies they try probably won’t be effective long-term, if at all. And if they aren’t even aware of basic strategies and tactics, they will wind up frustrated, overwhelmed, exhausted and often angry.
Angry at their child, the world, society, God, and most of all, themselves.
That’s why when I help parents of children with autism I always begin with shaping their values. Why? Because values are the foundation from which to build long-term, lasting results.
The best way I found to share these concepts is through stories.
< My Thoughts > " I always begin with shaping their values.”
“Shaping behavior’ is a technique that came from behaviorism, a field of psychology established by B.F. Skinner based on the relationship of behaviors and their reinforcement of preferred items such as food or praise.” Retrieved from www.thoughtco.com/shaping-a-teaching-technique.
Bodfish (2004) tells us that there is ‘empirical’ support for interventions which include three pivotal parts – (1)teaching & reinforcing alternative behaviors (2) environmental arrangement or structuring (3) shaping or graded change.
‘Shaping behavior’ is different than managing ‘misbehavior’. Instead, ‘shaping behavior’ is structuring activities to reflect a desired outcome. Some use ‘social stories’ or ‘video modeling’. (www.DorisDuanYoung.com/AutismApps ).
“Social stories are simple stories (a created one-page, age-appropriate-reading-level story with pictures), that helps students learn about appropriate social behavior.” You may write your own stories or find them ready-made online. Retrieved from: http://www.teachhub.com/social-stories-autistic-students.
“Video modeling is a visual teaching method that occurs by watching a video of someone modeling a targeted behavior or skill and then imitating the behavior/skill watched.” Retrieved from: http://www.watchmelearn.com/video-modeling/what-is-video-modeling
10% All parents want their children accepted and thought of as any other children. They want their children to be respected. They want their children to feel happy and good about themselves. Some even consider the term “autistic child” insulting…
< My Thoughts > “They want their children to be respected. They want their children to feel happy and good about themselves.”
Sometimes those ‘living’ with autism feel that parents/society refuse to accept them the way they are. Instead of embracing their differences parents/society set about trying to make them ‘normal’. This is not always the case. Many parents just “…want their children to be respected. They want their children to feel happy and good about themselves.”
17% The stages of grief are used to describe what people go through when somebody close to them dies.
Nobody died. Those children and families are still there, needing help. They didn’t disappear off the face of the earth.
< My Thoughts > “Nobody died. They didn’t disappear off the face of the earth.”
Many authors refer to Elisabeth Kubler-Ross’ “5-stages of grief” – denial & isolation, anger, depression, bargaining, and finally acceptance. Sicile-Kira (2014) explains that “Whether a young child who seems normal and later ‘slips’ away into autism. Or, the infant not meeting developmental milestones, the emotions that a parent goes through are ‘like’ these. But instead of reaching each stage chronologically, parents of children with autism experience them on a continual cycle… going through different stages at different times.”
“Parents never completely graduate out of these stages; just learn to spend more time in the ‘acceptance’ phase. Parents are experiencing the loss of their fantasy child, the one they had hoped and dreamed about.” “Parents can use the stages of grief to energize themselves to fight for the child’s right to a bright future.”
19% Autism is a label that’s used in the real world to help make it easier to identify and treat certain people who have identifiable behaviors that they might want to change, or improve upon. There are a wide range of behaviors that fall under the Autism Spectrum.
This is all necessary medical terminology that’s used in diagnosing patients. It’s necessary because insurance companies, medical providers, and public sector organizations need a way to systematize the way in which people receive help, and how that help is paid for. That’s part of the business of autism.
< My Thoughts > “…medical terminology that’s used in diagnosing patients. That’s part of the business of autism.”
Your child’s most valuable records may be those which reflect his or her diagnosis as designated in the current Diagnostic & Statistical Manual of Mental Disorders, simply known as DSM-V. Edition ‘V’ no longer refers to Asperger’s as separate from Autism Spectrum Disorder (ASD), but is noted as a ‘degree’ of ASD.
For instance, your child’s autism may be gauged by professionals as ‘#1 (low), #2 (moderate), or #3 (severe)’ in Social & Communication,
and/or ‘#1 (low), #2 (moderate), or #3 (severe)’ in Restrictive, Repetitive Behaviors (RRB’s).
It is very important that your child’s diagnosis reflects what s/he ‘looks’ like according to the DSM-V. With the ‘Asperger’ designation removed… many in the Asperger community feel that they have been negatively relegated to a ‘lower’ order of autism.
Bogdashina & Casanova (2016) relate that “the May 2013 fifth edition of the DSM-5 contained helpful changes in the diagnostic criteria of ASD, including the introduction of ‘sensory symptoms’, for example, hyper-reactivity or hypo-reactivity to sensory input. Hyper-reactivity is described as an unusual interest in sensory environment; excessive smelling or touching objects; and fascination with lights or spinning objects. Hypo-reactivity is the apparent indifference to pain/heat/cold; adverse response to specific sounds or textures.
Davide-Rivera (2015), herself diagnosed with Asperger’s, explains that adults with autism experiencing sensory disorders may display (under) hypo-responsive sensory seeking behaviors in some areas, while at the same time exhibiting (over) hyper-sensitivities in other sensory areas. Their environment needs to be adjusted in order to make them comfortable and less reactive.
21% We all live under the illusion that once we achieve our goals we can then, and only then, be happy.
Instead of hoping their son or daughter gets into Harvard, they’re now hoping he or she will just learn how to get through the day without throwing a tantrum in public.
What’s the cure for this? Two words – unconditional love.
< My Thoughts > “…unconditional love.”
Parent and author Kerry Cohen (2011) speaks of unconditional love… “If Ezra weren’t who he is, if I didn’t love him with that fierce animal love we feel for our children,” I might see a disabled child and think… how sad. “I want Ezra and Griffin to know that they don’t have to do anything to be loved. They don’t have to be anything other than who they are. That no matter what happens, no matter what they do or say or become, I will always love them…”
21% It’s impossible to love somebody and judge them at the same time. It’s impossible to love somebody and be impatient with them at the same time. It’s impossible to love somebody and be angry with them at the same time.
I learned this from ‘My Kids’. Kids who were dropped off at my group home like Janey, William, Leon and Debi.
Those four beautiful souls whose behaviors were so problematic that they couldn’t live in their own homes taught me, reminded me, that the solution to every problem isn’t solving the problem. It’s appreciating the journey, celebrating the progress, and experiencing being in a state of unconditional love every step of the way.
22% When I first met Janey in 2001 she was 8 years old and she averaged over 300 violent, aggressive acts a month. She had been adopted by her mother, Yolanda, when Janey was just 3 months old. Janey was thrown out of every pre-school she attended. The morning of January 10th I was on my way to the mall to get,now 20 years old Janey, an engagement present.
24% When Janey first arrived she was dressed in a sparkly, pink shirt and green Capri pants. Her hair was dark brown, and very curly. Janey’s mother Yolanda, stood in the doorway with Janey standing nervously beside her.
This was it. The day we had been waiting for. I greeted Yolanda, Janey, and her brother. This was going to be a new adventure for all of us.
One thing that struck me about Janey, after getting to know her and spending so much time with her, is how much she appreciated even what seemed like the smallest things in life. Yes, she would get frustrated and violent. We had strategies and the will to help her with that.
But what we could never teach was the pureness in her heart, the appreciation, the sense of wonder that Janey had about life.
Janey loved and enjoyed each moment. A butterfly might land on a nearby flower, and Janey would sit and stare with amazement and joy every time, even if it was the 100th butterfly she saw that week.
Sometimes when the other children would be upset, Janey would comfort them. Being totally present in the moment, appreciating her friends for who they were, not judging them for their inconvenient behavior.
Every night at dinner Janey would say thing like, “This is the best spaghetti I’ve ever tasted,” even if it was the 5th time we had spaghetti that month. Every bedtime story was the best she had ever heard.
Of course there were times when Janey did things that required us to intervene. Sometimes the interventions could appear harsh from an outsider’s view. One night in a restaurant we had to use a “mat wrap” to calm Janey down, and keep her from hurting herself, or others around her.
A “mat wrap” is like a yoga mat. When a child is so out of control that nothing else can be done to calm the situation, the mat is wrapped around the child like a blanket. Then we just hold the child until he or she calms down.
< My Thoughts > “mat-wrap”
Most children with autism and sensory processing issues are calmed and comforted by the deep pressure of being wrapped. Children with sensory issues respond to weighted blankets filled with the same kind of poly-pellets used in Beanie Babies. The ‘mat-wrap’ seems to create the deep pressure which calms and comforts the over-stimulated child or adult.
In addition to the ‘mat-wrap’, there are several crisis management ‘escort and therapeutic holds’ which are safely used for both the child and the adult. These ‘holds’ may be needed to meet a person’s needs, move them to a safe location, or prevent them from hurting themselves or others.
Schools, group homes, and other care facilities are subject to rules and regulations regarding ‘mat-wrap’ use. Individual states have laws to protect citizens from ‘restraint and seclusion’. Medicare, www.Medicare.gov cautions the client/patient has the right to take part in developing their health care plan, including a ‘say’ as to whether chemical (medication) and/or physical restraints will be used or not.
Parents also have the right to state in a letter what the ‘institution/facility’ has permission to use as their child’s behavior intervention protocol. Parents – Be careful not to sign away those ‘rights’ in documents you may rush to sign, in order to place your child into a public or private school or facility. Just saying.
24% This is why doing things from a place of love, not frustration or anger, is so important. Janey knew that we were helping her calm down. She fought us tooth and nail at times.
There’s no magic pill that’s going to take a child from 300+ violent acts per month to zero. It’s a gradual learning process.
Janey understood this. She never held a grudge. She could always sense that we were there to help her.
What she didn’t realize was how much she was helping us. Every day seeing the joy in Janey’s face when she made the smallest steps of progress was an inspiration.
Janey walked over to Aimee and put her small right hand on Aimee’s much larger back. Janey had no fear. Aimee continued to rock back and forth on her bed, and sob.
36% It’s okay, it’s okay, Janey repeated over and over as she gently rubbed Aimee’s back. Each kind word said by Janey seemed to deflate Aimee’s anger, like the air slowly leaking out of a balloon.
Compassion. Understanding. Empathy. Unconditional love. These are all things we’re taught that we must have when working with children with autism.
< My Thoughts > Compassion. Understanding. Empathy. Unconditional love.
Greene (2016) asks us that “Out of all the qualities on the more positive side of human nature, which ones are the most important? Which ones do we most urgently need to model and try to make sure that our children acquire? Acts of compassion and empathy.”
“Sometimes our adult energy, effort, and persistence in ensuring that our expectations are met make it harder for the child to meet that expectation.” Fatigue and frustration sometimes cause parents to forget that collaborative partnering with kids to solve their behavior-causing problems will achieve more success.
36% It’s easy to teach that we’re supposed to have these qualities, but it’s impossible to teach somebody to take on these qualities.
Unconditional love, understanding, and compassion are things that the children in our group home had for each other. They were a family. They had each other’s backs. They had an unspoken bond that transcended the tears, the outbursts, and their daily struggles.
It took months, but once Janey realized that she knew her left from her right, and that she could cross a street safely looking both ways, she was overjoyed. It was like she hit the lottery every time she accomplished something that to adults would seem small.
Sure, Janey could become upset easily. What amazed everybody about Janey, and about all the kids at our home, was how easily they could be happy. How easily they laughed and smiled. How easily they loved and cared for each other.
25% “If only you’d believe in miracles so would I…” That’s one of the biggest gifts the children have given me. It’s like they have a sixth sense, an appreciation for the miracles that are around us all the time. Some people spend their entire lives chasing their dreams and never once experience the pure joy for simple things in life that Janey did, and still does, on a daily basis.
I knew whatever I choose Janey would love it. She knew that the gift was just a token of what came from my heart. Life is so much easier when you see everything as a gift.
27% Debi was the complete opposite in personality to Janey. Where Janey was the whirlwind that made a grand entrance (and sometimes exit) to every scene, Debi was quiet and introverted. Debi didn’t say much. She was what some people may describe as a “high functioning” autistic child.
But she still had problems that she needed to overcome. Serious problems.
< My Thoughts > “Serious problems.”
Serious problems may occur when the child with ASD is transitioning from one activity, location to another, or across settings. The main goal is to defuse and deescalate these dangerous behaviors for the safety of the child and the caregiver.
Matson & Rivet (2007) discuss the seriously challenging behaviors which impede learning and compromise the child or adult living and learning in more independent settings; such as family or group homes and public schools. They describe the challenging behaviors as ‘self-injurious behavior’, ‘aggression & destruction’, as well as ‘seriously disruptive behaviors’.
Self-injurious behavior – Harming self by poking, hitting, pinching, hair pulling, scratching and other behaviors.
Aggression and destruction – Kicking and throwing things, severely banging, hitting and yelling at others.
Seriously disruptive behaviors – Defecating, urinating and removal of clothing in public, running away from caregiver, repeated inappropriate vocalizations and body movements.
27% There were times she’d become frustrated, even violent. Most of the time her outbursts would be directed towards inanimate objects, like her bedroom furniture. Debi was above average in size and strength. It didn’t take much effort for her to destroy a piece of furniture.
Debi’s frustrations often came from being frustrated about not being able to complete what most children her age would consider simple tasks – like spelling her name correctly.
Whenever Debi was successful we’d give her a “reinforcer,” something as simple as a gold star on her chart. Over my 20 years as a behavior analyst, and my 8 years as a parent (and as a wife!) I can tell you there’s nothing more powerful and rewarding than giving the people you love positive reinforcement.
And remember what it is like to be a ‘fun-loving’ kid. Better yet, unconditional love makes it almost impossible to judge or blame your child when their progress isn’t living up to your expectations. (Know the quickest way to go from frustrated to happy? Change expectations to ‘positive anticipation’. Works every time.)
Allow that unconditional love to flow from you to the people you love the most.
Debi was a very gifted artist. For whatever neurological reason her gift for art didn’t translate easily into reading or writing. Her verbal and language skills were not at an effective level when she arrived at our group home.
Our mission, our passion, is to identify those areas where a child’s skills and results may need some help, and then do everything we can to help them learn how to do things most people would consider simple.
More importantly, we’d help them do things that would allow them to become independent and “functional” in the outside world.
< My Thoughts > “…become independent and “functional” in the outside world.”
Back in the day, when Sonny was in an institutional setting, he was an eloper and inflicted injury to anyone who stood in his way. I have since figured out that he was running to try to stop his frequent and scary seizures. But, the only way his caregivers could deal with taking him into the outside world was to harness him in a wheelchair. True story. He spent his school days in, and was transported in a wheelchair for ‘containment’.
27% For months Debi struggled with learning how to write her own name. Debi is not a complicated name. Debi’s last name is only a little more difficult than her first name. We would practice with her daily. And daily Debi struggled. It’s our job to keep her moving forward, reinforcing event the smallest steps of progress.
Even with this constant reinforcement Debi struggled. We would help Debi work through the struggles, whatever it takes to get results.
It was Debi’s 10th birthday. I had stopped by the store to get her a small gift and a card, when the director of our home called me. She said Debi had a present for me.
28% I was excited walking up to the door, but I had no idea what was about to happen, and how it would change my life. As soon as I opened the front door I heard Debi’s voice call out to me. “Miss Doris! Miss Doris! I did it! I did it!”
Debi practically jumped into my arms trying to show me the piece of paper. There it was, in big block letters. DEBI JEAN.
Debi had finally learned to write her own name. When I think back to that moment, and so many other like it, I get tears in my eyes. Happiness = Progress.
31% Life becomes a joy when you know that you’re going to celebrate something every day. The secret is making it easy to feel happy.
< My Thoughts > “Life becomes a joy when you celebrate something every day.”
Sicile-Kira (2014) “Tip for parents: Celebrate and cherish each and every one of these moments. Tuck them away and pull them out on the days when you feel bleak and could use some hope. These are the moments that make you feel that life is good. Treasure them, and share them with those who have shared your sorrows so they can also share in your joy.”
31% If you set your life up to make it easy to celebrate and be happy no matter what’s going on in your external world, not only will you be less stressed and happier you’ll make everybody around you feel better. Especially your kids.
And when your kids feel better, they’ll make more progress. My belief is that the fastest way to be happy is to turn expectation into appreciation. And the best part? Everybody is happy and feeling better while your kids are making progress.
34% Being smart is learning how to effectively and efficiently produce results. As a behavior analyst I look for cause and effect relationships. It’s my job to discover, like a detective, the direct cause (antecedents) of disruptive behaviors.
Almost every local or state government in the United States has a family agency to intervene on behalf of children. Many people don’t realize that there are thousands of families with children whose behavior is so disruptive that the desperate family contacts the local government office for help.
< My Thoughts > “…every local or state government in the United States has a family agency to intervene on behalf of children.”
Find out the lead agency for your State at the ECTA Center: http://ectacenter.org/contact/ptccoord.asp
Historically, families bore children to share and enhance the workforce and to care for parents and grandparents as they aged. The first child welfare services program were created as part of the Social Security Act in 1935. Family preservation and support did not become Public Law until 1993. Family preservation and support did not become law until 1997. Shocking as it may seem.
States receive funds from the federal government to deliver human services that emphasize counseling, family preservation, family intervention, advocacy and education. The Office of the Attorney General in your state offers parents, grandparents, and guardians help with a variety of issues; as well as a list of community service agencies to contact.
34% What happens with many disruptive children and teenagers is that the case workers from these government agencies have no choice but to detain these children in what amounts to a jail. There is no choice because some of the children are so aggressive they are a risk to themselves and their own family members.
The problem is that these children will only get worse, no better if they are put into a detention center. That’s why the Florida Office of Children and Families asked me to open a group home for some of these children. They knew that I could help the children better than a government agency.
< My Thoughts > “…group home…”
Only after we were able to bring Sonny home as a foster child, did he respond to toilet training. He was 13 years old.
35% Aimee had recently come to live in our group home. Unlike Debi and Janey, Aimee was not able to verbally communicate. Her language skills were not developed.
First the bed clothes were ripped off the bed. The sound Aimee let out was like something you’d imagine a wild animal would make. Next, the mattress came off the bed.
When Aimee became frustrated, or when she wanted something and didn’t know how to express herself, she would do the only thing she knew. She would become physically violent and destroy whatever was near her.
From a behavioral analyst’s point of view, every behavior has a function, or intent. One of the ‘mistakes’ parents make when children calm down after a tantrum is ask them “Why did you do that?” “Didn’t I tell you that you’re not supposed to do that.” “What’s wrong with you?”
< My Thoughts > “What’s wrong with you?”
From Mad in America.com, “What’s wrong with you?” by Michael Cornwall, PhD tells us that, “We are all capable of having any of the range of human emotional experiences, to any degree of intensity. They are formed by what happens to us and how our needs get met or not met.”
According to Greene (2016), “You shouldn’t be asking the “why” question very often.” “I learned a long time ago that the adult jumps to the conclusion that the child knows the motivation behind their behavior.” When seeking clarification ask instead, “So, help me understand what happen…” Or, “I noticed that you seem to have trouble with…” “What’s up?” Then the parent can ‘repeat’ what is heard in order to further clarify ‘why’ the child did what they did.
“Okay, so I think I understand now. Maybe we can figure out what to do so that won’t happen again. Do you have any ideas?” Greene cautions that parents shouldn’t do ‘all’ the problem solving, but let the child identify what’s happening and how to deal with the emotions or sensations they are experiencing; using whatever communication methods they need to accomplish this.
35% Many children with autism have never developed the ability to communicate effectively with words or language. They have learned to communicate physically, often with rage and anger.
Aimee began her tantrum that night in the living room in front of all the other children who lived in the home, including Janey. Unlike Aimee, Janey was highly verbal when she came to our home… in fact she swore like a sailor.
Jane watched intently as Aimee was lead from room to room. I’m sure Janey could relate. There were many times when Janey had to be physically constrained in what we call the ‘mat wrap’.
Aimee was older and much larger physically than Janey, but she was at a much lower level in her emotional and functional development. Janey treated Aimee like her little sister.
40% William was a very small, cute, typical looking 6-year old. By looking at him nobody would know he was autistic. Amber and Adam also had a 2-month old baby daughter. Their world was already being turned upside down every day by William.
He was a miniature version of his dad. Very slender, almost timid looking. Looks can be deceiving.
When William had trouble communicating he would become aggressive, even violent. When his baby sister was born William escalated both the intensity and frequency of his outburst. The target? His baby sister, Emily.
Leaving Emily unguarded for even a few seconds could result in William doing serious physical harm to his sister.
41% One of my monk friends says, “You can’t love somebody and judge them at the same time.”
He’s right. I watch my kids exemplify that every day.
The rest of the world is not like that. One of the biggest things parents of children with autism deal with is fear of judgment and ridicule by the outside world.
Many parents won’t even take their children to the supermarket, not because the kids act out, but because they fear the condemning stares of total strangers.
41% When I told Amber that it might take a year for William to learn new behaviors to replace what we call his “maladaptive” behaviors she began to cry again. She said, “He’s so small. He’s still my baby.”
“I’ve got this, Amber. He’s my baby now, too,” I told her.
42% Yes, the kids have autism. That’s part of who they are. When they make progress they don’t change from kids with autism to kids without autism. That’s not how it works.
< My Thoughts > “they don’t change from kids with autism to kids without autism.”
Bodfish (2004) examines how “deeply” established treatments impact the range of symptoms that are expressed in autism within each domain area. He says, “Research has indicated that social skills appear to be pivotal responses that, when trained, can lead to improvements in other non-targeted symptoms of autism, such as verbal and nonverbal communication.”
“While autism is undoubtedly a brain disorder, the neurobiological basis of autism remains to be identified.” “Look for successful interventions for overt behavioral symptoms such as hand flapping, body rocking, object spinning, obsessionaly restricted interests and poor response to novel or new interests.” Finally, he cautions that interventions cannot be successful when operating in a vacuum. Parents shouldn’t be lead into the false dichotomy of “pills” without “skills”… never one without the other.
42% Instead, they change like tiny circles growing into larger spheres. Or, tiny squares growing into larger cubes. Or, tiny triangles growing into larger pyramids.
Their change is not superficial; it’s a three-dimensional expansion of who they are.
They become, daily, the best they can be. Like their relationships with each other, their transformation isn’t superficial, it’s deep and lasting.
Eight months after William was dropped off at our group home, Adam and Amber were back. They brought Emily, who was about to have her first birthday. This time they came to take William home. I feel so blessed to do what I do.
43% Redefining patience. Communication comes in many forms. Communication is a two-directional process. There is the person sending the message and the person receiving the message.
More often than not there is some essence of verbal communication that gets lost in the transformation of thoughts into words. Words are just symbols that make communication faster and easier, but not necessarily more effective.
Kids with autism fall somewhere on the verbal scale of communication. Some are what we refer to as verbal, other non-verbal. All are effective communicators at some level. We just need to listen with our hearts, and only then our eyes and ears. We’re so used to verbal communication that sometimes we don’t remember that our most primal communication is non-verbal.
55% The biggest million dollar secret is this: Being happy in the moment is what will also help you, and your child, make the most progress. It’s a win-win situation. I would never tell anybody what to believe spiritually, but if there is a God who created this world, wouldn’t it make sense that this is how life was supposed to work? Being happy is always good.
56% I thought back to all the children over the last 20 years that I’ve had the privilege to meet. During all those years of spending time with so many children and helping them accomplish so many things, I forgot to focus on all the gifts they had given me.
They’ve given me the gift of watching them be so happy and appreciate the ‘little’ things in life, to realize those ‘little’ things like marveling at the beauty of a butterfly were probably more important than the ‘big’ things I was focused on.
They’ve given me the gift of celebrating small victories and even small ‘defeats’ knowing that each moment is a new beginning no matter what’s led up to that moment.
Most of all they’ve given me the gift of unconditional love, and the desire to share all these gifts with you, and the hope that you will share these gifts with those who’ve been guided to cross your path. With the deepest love and respect, Doris Duan-Young.
58% In answer to some questions –
What do behavior analysts do? We are research oriented professionals who study the behavioral influences in the patient’s environment, then they work towards a solution; sometimes involving medication. Medication may involve improving current behavior in order to adopt an appropriate replacement behavior, depending on the patient’s condition.
57% Through applied behavior analysis (ABA), psychologists apply their experimental knowledge to people in order to objectively modify the actions of the individual. It is highly beneficial in numerous fields such as educational development and business management.
64% Autism Apps – One of the things we do as behavior analysts is to provide positive reinforcement for the children. The world of technology is expanding exponentially, giving us a tool with which to do this. Visit http://www.DorisDuanYoung.com/AutismApps for more!
90% Hypothetical behavioral intervention plan – to give you an idea of how the behavioral analyst begins working with your child. You would gather background information, including anecdotal incidences showing the behaviors targeted for deceleration. For example physical aggression to self and others. Elopement such as leaving a safe area and escaping into a dangerous area like a busy street. Verbal aggression like threatening harm to others. Tantrum behavior which can escalate to dangerous behaviors. Inappropriate sexual behavior such as taking one’s clothes off in public.
After the antecedents are identified then functional replacement behaviors are taught. When the child complies then identified reinforcers are offered. This is where the autism apps come in. Also, the child may like TV, DVDs, going somewhere special, listening to music, getting special attention from others, etc.
< My Thoughts > At this point an individualized program is created for the child and a staff and schedule is selected to implement that program. This includes follow-up evaluation, shaping and fading after the child has reached their goals. Not as easy as it sounds, but with consistency and unconditional love, it works.
End of excerpts from book, with < My Thoughts >
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References used in < My Thoughts > are:
Ben-Itzchak, E., Abutbul, S., Bela, H., Shai, T., Zachor, D. (2016). Understanding One’s Own Emotions in Cognitively-Able Preadolescents with Autism Spectrum Disorder; Journal of Autism Developmental Disorders; V46, p.2363 - 2371.
Bodfish, J. (2004). Treating the Core Features of Autism: Are We There Yet?; Mental Retardation & Developmental Disabilities Research Reviews; Chapel Hill, NC V10:318-326.
Bogdashina, O. & Casanova (2016). Sensory Perceptual Issues in Autism and Asperger Syndrome, Different Sensory Experiences – Different Perceptual Worlds; Second Edition: London; Philadelphia: Jessica Kingsley Publishers.
Cohen, K. (2011). Seeing Ezra: A Mother’s Story of Autism, Unconditional Love, and the Meaning of Normal; Seal Press Publishers, CA.
Davide-Rivera (2015). Symptoms of Sensory Procssing Disorder (SPD) in Autistic Adults. Autism Answers, Autism Behaviors Part II: Hypo Reactivity.
Greene, R. (2016). Raising Human Beings: Creating a Collaborative Partnership with Your Child; Scribner Publishers, NY.
Matson, J., Rivet, T. (2007). A Validity Study of the Autism Spectrum Disorders – Behavior Problems for Adults Scale; Journal of Developmental & Physical Disabilities; 19,p.557-564.
Sicile-Kira, C. (2014). Autism Spectrum Disorder (revised): The Complete Guide to Understanding Autism;
New York, New York: Penguin Random House Company.
Zhou, T., Yi, C. (2014). Parenting Styles & Parents Perspectives on How Their Own Emotions Affect the Functioing of Children with Autism Spectrum Disorders; Family Process, Vol. 53:1.
