Sibling Friendship and Aspergers: When Childhood Friends Outgrow Each Other

I don’t know if telling this story will date me, but I guess it doesn’t matter that I grew up in the sixties. I remember as a child, that song and story about Puff the Magic Dragon. The special friendship he and Christopher Robbins had together, but then the boy grows up and Puff hangs his head and cries. (Or was that Tom Dooley and Winnie the Pooh? LOL) Anyway, my kids have been best of friends since the beginning of time and long before that. My daughter, Carmen, and son, Jesse, have a sort of love for each other that I pray every day never ends. They even have a secret language and I often hear them babbling away together and cracking each other up with their private jokes. My son looks at his sister and her funny little ways and I can see it in his eyes that she brightens his day, and he her’s.

childhood, siblings, friends

In just the last couple of years, this has been a growing concern for me. They are getting to an age where most siblings just can’t tolerate the sight of each other. Luckily this hasn’t been the case in my home, but I see something else occurring. My daughter has been developing in a more sophisticated way than my son. Her speech has greatly improved, her social skills are growing in leaps and bounds, and she is succeeding in general ed classes.

I am sad to say that in some ways, she is leaving her brother behind.

Autism Does Not Define Him

Our son Sam is now 22 years old. Together we have discovered Autism first from a stage of confusion, then diagnosis and ultimately the journey toward understanding and adjustment.  This journey hasn’t been taken by just Sam or me. The education and life-changing decisions included our family of four and those whose chose to remain linked to us either by love or simple curiosity. Autism became us. As we learned to navigate the education system, employment and higher education, we’ve taken you along.

Through our website Aspergers101, together we have reached for stories of enlightenment and searched to navigate our next stage in life. Now at age 22, driving and nearing college graduation, Sam has reached a personal plateau that bares sharing. With an absolute delivery he declared, “Autism does not define me”.  He further went on to explain that up til now, he would introduce himself to educators, peers or the seldom few who initiate conversation as “Hi I am Sam…and I have autism.” He felt he owed them an ‘explanation’ for his social awkwardness, his lack of eye contact or his seemingly bland behavior.

Handy guide for everyone involved: neurotypicals and Aspie partners/kids

by: Marcia Eckerd, Ph.D.

This is an excellent guide for communication. As a parent of a son with Autism, I had to ‘learn’ to communicate with my son. This lesson of communication was learned both from the both of us….a neurotypical and an Autistic mind. The article below, by Dr. Marcia Eckerd, touches on a topic we could all better apply…that of communication.  -Jennifer Allen/Aspergers101

Why don’t people and their interacting style come with manuals? Parents and partners often misunderstand or don’t know how best to talk with someone with Asperger’s, and people with Aspergers can have trouble understanding and communicating with those who think differently than them. If you are the neurotypical partner or parent, you need to understand what different processing is like, with different needs and expectations. And the same  is true for those with Aspergers who are finding it difficult being with the people in their lives. Everyone must take the importance of understanding seriously.

Here are some rules for neurotypical partners or parents of Aspies:

  1. Understand that your Aspie often won’t necessarily understand your need to feel gratified by connecting. He or she might go to an office/room and ignore you, for example. This doesn’t mean a lack of caring – it means that this meets his or her needs, and he doesn’t get it that you need something more. He may see your need as a difficult demand if he needs some space.

Q&A With Lisa: How do I get my child qualified for special ed?

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Q:

Dear Lisa,

“I suspect my child has autism or some related disability. He is in the early elementary years. How do I get my child qualified for Special Education services in public school and what do they offer?”

-Confused and Concerned in Texas

A:

Dear Confused and Concerned in Texas,

Thank you for asking this question that many others surely have as well. I will do my best to clarify the referral process from a parent’s perspective and possible services. However, you are always welcome to contact the campus Principal and/or the special education department of your current campus/district and present your question to them directly. Their response will give you an overview of the process which I will outline in this article through multiple resources and a flowchart.

Since you have mentioned that you suspect autism or some related disability, I have also included a resource that might help you to clarify your concerns in those terms if/when you do make the phone call to the local special education office.

A Man Worth Meeting

We want you to meet Maverick. A man who inspires anyone, diagnosed with Autism or not, to live to their potential no matter the circumstances. It will make you rethink what you believe are obstacles and hold compassion for others whose journey came from a road less traveled. We think he is a man worth meeting! – Jennifer Allen/Aspergers101

My name is Maverick L. Crawford III, and I was born in April (same month is Autism Awareness Month).  I remembered how odd and wired I appeared to be compared to my other siblings. My behavior starting at six months was repetitive and restricted, every day I would hide from everyone and not play with my siblings.

I want to help, support and inspire others on the autism spectrum to not give up or lose hope no matter what you are going through, keep pushing, keep striving, keep persevering to the end there will be a greater reward.

Maverick L. Crawford III

The movement of doors as they open and close was fascinating to me. Any of my toys that were rectangles, I would stack in a specific order as high as possible. If I were not playing with toys, I would entertain myself by hand flapping and be flushing the toilet and watching the water flow down the commode. As a child, I would stay to myself and not respond to my name.

When my mother or siblings touch or find me somewhere in the house, I would have a temper tantrum.  I would suck my ring finger through the day and night as it provided a sense of comfort. Early in my life, I could not understand social interaction (and try to avoid it), nonverbal communication and never maintain eye contact. My mother did not fully understand what was going with me and relied on doctors and professionals to deal with my issues.

I was born an abnormally thick line that connected my tongue to the bottom of my mouth, which is called a tongue-tie. The pain from this tongue-tie was unbearable so much, so I had trouble eating and keeping food down without getting sick. After years of the pain caused by this deformity, I had tongue clip surgery in 1999 at the age of three. Later that year I was diagnosed speech impediment, mental retardation, dysphasia (serve language and speech disorder), autism, attention deficit disorder and having multiple seizures. Being a child with various disabilities like autism brought stress upon my mother because she did not know what approach to take in dealing with the issues I had. Me being the only one with multiple disabilities out of my sibling, I felt like a stranger in my family and unfortunately treated differently.

During a Meltdown

In previous blogs we have addressed the complex topic of meltdowns. While the main message is to have a plan to PREVENT a meltdown, we must also be prepared if a meltdown does occur.

Portrait of unhappy screaming teen girl

I will start by outlining what NOT to do. I think this is best said coming from someone that has lived through a meltdown with neurological implications.  The following is an excerpt from a message from Mr. John Scott.

Asperger Fact Sheet

by AANE Staff

We thought this a great basic overview (face sheet) of Asperger Syndrome by the staff at the Asperger/Autism Network. Nice to share if you or someone you know suspects autism.

About Asperger Syndrome:

  • It is a neurological condition that affects the way information is processed in the brain.
  • AS is a hidden disability. Many people appear very competent, but they have difficulties in the areas of communication and social interaction.
  • AS has a genetic and hereditary component and may have additional interactive environmental causes, as yet unknown.
  • AS is a developmental disability. All individuals have social/emotional delays, but continued growth seems to be life-long.
  • The incidence of AS is thought to be 1 in 250. As many as 50% of people with AS may be undiagnosed.
  • There are currently four males diagnosed with AS for every one female, but the true ratio may be as high as one female for every two males.

AS affects each person differently, although there is a core set of features that most people with AS have, to different extents, including:

    • Having a very high intelligence and good verbal skills.
    • Having challenges with the use and understanding of language in social contexts.
    • Having trouble understanding what others are thinking and feeling (called Theory of Mind or perspective taking).
    • Needing to be taught social behavior that is “picked up on” intuitively by others.
    • Having difficulty understanding non-verbal cues such as hand movements, facial expressions, and tones of voice.

ASD and Trouble Sleeping?

Searching for 125 Sleep Study Participants

If your child (or young adult) diagnosed with ASD has difficulty sleeping and would like to try out a Sound Pillow Sleep System (a non-allergenic twin size pillow with an easy-to-use MP3 Player pre-loaded with 18 one hour tracks of nature sounds, slow evolutionary music and noise files) please sign up!

Clinical Research Study includes the use of a Sound Pillow Sleep System for an 8-Week trial, at No Cost to Participant.

Picture: Wall Street Journal

We would love for you to help us with our research study. The Suzanne Vitale Clinical Education Complex and Western Kentucky University are currently recruiting 125 participants, Male and Female, ages 6 – 27, with an Autism Spectrum Diagnosis, experiencing mild-to-severe sleep disturbances. Clinical Research Study includes the use of a Sound Pillow Sleep System for an 8-Week trial, at No Cost to Participant. The Study is open to USA Residence (only); including Alaska and Hawaii. Acceptance into this study is based on a “FIRST-COME, FIRST-SERVED” basis.

Please click the link for more information or to sign-up!https://www.wku.edu/wkucec/soundpillow.php

 

For autism research pioneers, early work paved path to success

MICHAEL AUSTIN / THE ISPOT

Getting to the top generally requires years of hard work, committed mentors and many missteps along the way.We asked a few of the most distinguished autism researchers to share memories from their first autism study, including their initial assumptions and what they’ve learned since. Their answers reveal the origins of modern theories as well as how much ideas about autism have changed over the years.

Uta Frith:

My first study was inspired by an ingenious experiment by my wonderful Ph.D. supervisors, Beate Hermelin and Neil O’Connor. They compared recall for random words (for instance, “fish, ate, they, fresh”) and for the same words when they formed sentences (“They ate fresh fish.”). Normally, we expect recall for words in sentences to be a lot better than recall for words in random strings. But this was not the case for children diagnosed with Autism. I was fascinated by this finding and wanted to repeat it. This led to my first and only paper ever accepted without revision, in 19691.

 

In that first study, I recorded myself saying strings of words and played them back to the children and asked them to repeat what they heard. I soon gave up using the tape recorder, which only distracted the children. I found they willingly did the task as long as I spoke the words to them directly.