Her heart supplies flow to remote extremities not her own. Life beyond her own requires all she can give, all of the time, for the rest of her life. A new reality not familiar but all encompassing. She is the caregiver and life support for a child with autism. She is a Mother. In the shadow of the crowd she flows an internal stream of strength and resourcefulness. Joy is derived in the brief triumph of society’s perceived common performance, and sorrowful familiarity consumes her soul in clearing hurdles too high for the neurotypical masses. She is unobserved, often ridiculed, and apart from the crowd yet her strength and beauty resides above the noise of ‘normal’ and her soul finds respite in Gods gracious stronghold. She rises to her lifelong lot and delights in the fragility of life that often passes others understanding. Though often tired, her senses are keenly awake! She is a beacon, a heroine seen and respected by those, like her, forging life’s path for her child.

Sunrise by Claude Monet

Anxiety symptoms and reactions are very common in individuals with autism spectrum disorder (ASD). They can interfere with functioning across home, community and school settings. Scientific studies have found that from 11 to 84 percent of youth with autism suffer from anxiety symptoms – intense fear, trouble concentrating, rapid heartbeat, tension, restlessness or sleeplessness.

Lisa Rogers with Educating Diverse Learners answers a reader’s question about helping her son overcome his daily stressor. 

Q: Dear Lisa,

My son has fears. One thought gives him daily anxiety: that of his pants not staying up. We tried belts that he buckles too tightly. He still fears the pants will fall and the buckle gives extra sensory problems. We tried sweatpants that he ties tightly, still fearful. All day he hikes his pants up. I tried to show him the pants can’t fall down but this doesn’t help. He also insists on wearing underwear two sizes too big. He is 8 and diagnosed as PDD-NOS. Could you direct me to any information to help him? This fear is causing multiple meltdowns daily. I don’t know what to do. Thank you, -Anonymous

A: Dear Mom or Dad,

Multiple meltdowns each day can certainly take its toll on your son and your family. I understand how critical this issue is for you and will do my best to provide helpful information for you to consider.

In order to be most helpful, I do need to ask a few questions first.

  • Is your son able to explain in any way what is causing or contributing to this fear? You mention that this is a current situation and so any insight about the reason for this development will be helpful. As you know, children on the autism spectrum are often rule-driven and literal in their interpretation of language. Perhaps something an adult said with good intentions about the importance of keeping your pants up or a scene from a movie could be a root cause? On the surface this might seem silly, but this can help in better understanding your son and his very real fear.
  • If your son is able to communicate through words or pictures, you might try cartooning as a way to acquire insight. When he is calm and all is well, you can sit together and draw a cartoon where you ask him to describe his thoughts while he is walking with his pants snug and tight around his waist. If not too stressful for him, you could even draw a picture with pants falling down on a stick figure and ask him to describe his ideas/feelings about this.
  • Have you already tried suspenders or even overalls to provide a sense of security beyond a belt or tie? It sounds like there are compounding sensory issues and so these might not be feasible options.

For now, here are a few ideas to consider . . .

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My son, now 30yrs old has had difficulties since childhood, and we know he has Aspergers. During his teens he was extremely angry and sad but he came through this period. Today he lives independently, has his own home and car but for the past year he has not spoken at all to anyone. His life is restricted to his job, which is in jeopardy because of his refusal to speak to his co-workers. He was visiting me on Sunday but now that has ended. He literally speaks less than a “Yes” or “No” to anyone. We have been to social service, doctors, clinicians, speech therapists, psychologists, and he refuses to see any of them. Everything I read online is about children. Any advice?

-Doug

PerspectiveContinue Reading

A Quick Read

Even before the official diagnosis of Asperger’s Syndrome, we knew our son Sam walked apart from the crowd. His early intense interest in a subject matter, and not in his peers, was the perfect mix for oddity starting the early sociable elementary years.

While we, as Sam’s parents, grew to walk alongside (and later celebrate) the unique perspective Sam had on the world, it was me who was shocked to be set apart from the crowd.

(l to r) Charlie, Jennifer, Herb and Sam

The elementary years were full of field trips, lunch visits, and homeroom activities. When it came time for picking groups for the field trips, my son was not one who other mothers wanted for their sons. At this early age, most mothers were positioning their children to be the best, only with the best, and we didn’t fit their criteria.

So for many of those early years Sam and I sat alone as other mothers invited the more social children to sit with them. Support did not come in familiar places: relatives, neighbors, team sports, youth groups or, field trip Moms. In fact, it was those who were actually abusive to Sam that set the stage for above and beyond parental protection. So different from my youth or perceived visions of parenthood. After the shock and heart wrenching pain for my son, the realization sat in that I too, was isolated.

How Our Family Responded to Isolation

Our family had hit a harsh reality, so we decided to fight back in a way that did no harm to anyone, but bolstered our son’s confidence. We chose our son over the crowd. We eliminated the negative and stuck to the positives. My Mom and Dad (both have since passed) were so very supportive and loving and choose to take a big role in both our sons lives. We clung to that love and our sons were nurtured and flourished. You don’t need or should expect everyone in your family(s) to be supportive, just enjoy who does and build upon that. Together the four of us found a loving church home, become interested in all things our sons were interested in, enjoyed those who did make a conscience effort to be a positive part of our sons lives, traveled on weekends (verses attending typical soccer games), and marched to a new rhythm I had never heard before! At first it was scary, going a route we’ve never taken before. However, after removing the negatives, the anxious worry quickly subsided and Sam (and the rest of us) blossomed!

Hello to star-gazing, train following, computer lessons, pokemon’ tournaments….well you have your list too!

Being apart from the crowd became the norm and our sons both flourished.

I write this not to feel sad or ‘wallow’ in self-pity. Nor have I listed the struggles (you can refer to other posts covering that) of the journey. I write about the choice because it is that simple. Because this probably happens to many parents of a child on the spectrum. I want to encourage you to persevere and hold onto the unique qualities that are the very being of your Asperger child and to let go of any expectations you may have of others taking part. Bottom line: Forge your own path for your child and take along the handful of people who do want to be a part.

It does get easier the older they get, and the reward will be a son or daughter who knows that their uniqueness is a gift. Recently Sam was asked what it “felt” like to have Autism. His matter of fact reply was priceless: “Don’t think of Autism as a weight, think of it as a pair of wings”.

Being apart from the crowd is a great thing indeed.

By Jennifer Allen

meltdown

Although we have addressed the topic of meltdowns previously, it is a topic that needs to be revisited often, given the intense nature of the meltdown. “People with autism, new research suggests, may have an unusually large and overactive amygdala. This may be one reason why people with autism are easily overstimulated and have a hard time understanding and managing emotions.” – University of Washington

meltdown

This is one of many neurological findings that helps to explain how meltdowns are very different from tantrums. They originate from a neurological place of sensory differences: an over-abundance of neuronal pathways. The brain, whether through too much sensory input, cascading thoughts, chemical overload or some cumulative effect of all of these, gets overwhelmed!

I know individuals with autism can help understand the horror of the meltdown better than any observer. So I would like to refer to Carly Fleischmann for her unique perspective. The following is an excerpt from her website:Continue Reading

Many school students carrying the diagnosis of Asperger’s Syndrome exhibit challenges in the area of social interactions and social skills. These social difficulties are worrisome for parents and family members who look for supports to address these challenges. Struggles in the school setting often center on their child’s inability to “fit in” with other students or an inability to grasp social expectations from their teachers and peers. Additionally, their child’s feelings of high anxiety and stress can make the learning environment challenging for them and the people around.

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Over time, I’ve listened to concerns from parents and teachers regarding a student’s lack of understanding when it comes to social situations in the classroom environment. This often leads to isolation and the need for behavior support.

There is information in the literature that suggests both adult and peer mediated techniques to teach and build social skills in children with autism.

Strategies that are directed by an adult include reinforcement of shaped social skills. This is a technique where the child is reinforced when they demonstrate closer and closer approximations of a desired behavior. Peer mediated strategies incorporate the use of proximity, prompts with reinforcement, and teaching peer initiation. The literature also supports using social scripts to capitalize on visual learning methods (Krantz and McClannahan 1993).

In my experience, I’ve observed how visual supports can be very beneficial in producing non-transient messages for the student to follow and use during social situations. When paired with direct instruction using ABA techniques like shaping and reinforcement, social skills training can be accomplished.

When you set out to develop visual supports, first perform an internet search to get some ideas.

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Parents of any child with differences struggle with feeling isolated. One of the challenges for families with Aspergers Syndrome (AS) and nonverbal learning disabilities (NLD or NVLD) children is that these children don’t look different. They’re bright and verbal; their quirkiness, sensitivities and apparent oppositionalism aren’t easy to understand.

Kid having a tantrum

As a result, parents often feel blamed for their children’s special challenges. I know one mother who was told bluntly by her brother, “You must be doing something wrong. Give me two weeks with that kid in my house and I’d straighten him out.”

Parents are well aware that rigidity meeting rigidity doesn’t work and only leads to meltdowns.

Aspergers and NLD children require unique parenting skills based on understanding, acceptance, and appropriate interventions. Blaming and punishment don’t make family life any better and don’t encourage positive growth in children.Continue Reading

This blog by Jessica Nieminski is one that I love to re-post every so often. For most families, it’s reality…a child diagnosed with autism who deservingly requires special guidance and extra attention. However, what happens to the neurotypical sibling(s)? Oftentimes they grow up either an ambassador for those with disabilities or they are full of regret for the attention they did not receive. It’s an almost impossible balancing act for sure. A special homage to the siblings.                                      -Jennifer Allen/Aspergers101

There are so many moments in life that are filled with such amazing joy, and there are those that cause worry in the back of your mind. The kind that keeps you up at night and causes a pain deeper than you knew pain could go. While both of my children are my world, this is a letter to my 4-year-old daughter about her life, and how having a sibling with ASD affects her:

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Grace,

I see the look on your face when the day has stopped once again to tend to the same thing. The confusion I know you feel about the differences between yourself and your brother are very much real.Continue Reading

Recovery may involve time to do nothing at all. For some students the recovery phase involves a process that takes him or her from a semi-agitated state to a fully calm state.

child in class

Consider the following steps:

  1. Allow the student to engage in the highly preferred/calming activity without setting the timer until he/she appears to have recovered as fully as possible.
  2. Once he/she is calm, then set the timer for 5-6 minutes. If he/she remains calm and is able to transition to the next activity, then do so and watch for early signs of repeated escalation.
  3. If he/she requests more time [by giving the timer to the adult], then honor the request and set the timer for 3 or 4 more minutes. Continue until he/she no longer requests more time or staff feel she is ready for a positive transition to the next activity.

Once the person is fully recovered, then it might be possible to debrief and make a plan to prevent future escalation. Pictures and words can help to paint a clear picture and develop a workable plan.   

By Lisa Rogers

Breathing room or ‘alone time’ is good for anyone, but for someone on the spectrum it is crucial. When Sam was very young I found myself, as his mother, wanting to arrange play dates with other children who were not exactly knocking on our door for playtime. My reasoning was he must be lonely, so I did everything in my power to elicit playmates. Offering the best snacks, coolest toys, or excursions to area attractions, but it didn’t take long before no one came around.

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My son was alone.

What I’ve come to realize is that this is alright with Sam.

He really prefers time alone verses a party. Really. It was me who was projecting my ideas of companionship on him, a neuro-typical brain trying to outguess his autistic brain.

Fast forward 10 or so years and his contentment with an occasional relationship is greatly satisfying for him, and he does have a few. His time alone, however, is a structured necessity for him that keeps him grounded and on-task for the really important things such as work or school.

So as parents we should relax just a bit. Although socialization, to a degree, is important, allow your Aspergers child to be their own person.

Time to read, explore, invent, create or yes, online gaming to a degree can all be good for someone with Aspergers Syndrome. Sam even found companionship via social media sites.

If I could look back at my earlier self I would say “Relax just a bit. He is not as uncomfortable not being invited to parties classmates give, it is only me who is uncomfortable with this”.

Look a bit closer at your Asperger child to understand just how far to push socialization at an early age. You might be going to great means only to satisfy yourself, when in reality a simple outing like a trip to a museum with you might more than suffice.

by Jennifer Allen

Technology and exercise? I know what you are thinking, how can I use a fitness product like a smart watch or fitness bracelet to get my child to exercise? Do I need to or am I financially able to purchase a fitness product like that? What if they don’t like it or use it and I’ve already spent the money buying it. Is there setup of the product or is it ready for use?

running and technology

Technology can be overwhelming but can also be very useful. The amount of fitness products out there is tremendous, but they each serve a purpose and a specific fit for someone. Today’s discussion will be on technology use during exercise but it will take a different perspective than you think.

Video Game Systems

Video game systems can be a contributing factor to our kids becoming less active. It is difficult for kids to move away from technology altogether so why not make it work for us? Video game systems have games available for purchase that are fitness/exercise oriented in which the person becomes the game controller.

For example, the Wii game system has: Just Dance 2016, EA Sports Active 2, and EA Sports Active NFL Training Camp. Similar game systems like the Xbox have the following games: Xbox Fitness, Nike Kinect Training, or Playfit. Lastly, the PlayStation has games like: Move Fitness, Zumba Fitness, and Sports Champions. These games use the person’s movement as a way to control the game. So, by dancing and moving you can get your kiddos to burn some calories while having fun.

Cell Phones

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My Son: Through the eyes of a Father

I am the father of a son with Aspergers Syndrome and through the years of my wife and I raising him, it has had many challenges for me.  As a father I wanted him to take interest in outdoor activities, sports and other things that we could do together but while he was not interested in these things there were other items of interest that I had to adapt to in order to spend the most amount of quality time with him.

My Son: Through the eyes of a Father

While he may not have had interest in what I thought a young boy, now a man, “should” be interested in, he has opened my eyes to a different world that has brought us closer together over the years. I just had to be the one to approach his interests with an open mind and with the idea that these were things we could do as a father and son.

The many times that my son was being called names or bullied by his peers I had to be supportive and encouraging in creative ways, primarily to teach him how to ignore those and look forward to the future with special father and son times together.

Some words of advice from a father of an aspie:

  • Learn to be a listener;
  • Take interest in his activities, not those you think a young man should take interest in;
  • Find things to do outside the home that you can teach him and he is interested in;
  • Be supportive and patient, as typically those with Aspergers will find it difficult to relate to things we take for granted as well as conveying their thoughts in the same manner we are accustomed to;
  • Above all, be a father as well as a dad, they will never forget the times you spend with them and the memories you are making.

by Herb Allen

Just in time for Fathers Day! This is a practical way for Dad’s to show their support and pride for their child diagnosed with Autism or Asperger Syndrome! Purchase “The Autism Charm” Key Chain now and receive 10% off your gift with code “fathers day” at check out!