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

Effective Sept. 1st 2019, The Samuel Allen Law will allow individuals with conditions that may affect their communication abilities, the option to disclose that information when registering a vehicle with Texas Department of Motor Vehicles

AUSTIN, TX (August 15th 2019) Samuel Allen speaks to the media from the Texas State Capitol/Governor’s Press Room

AUSTIN, Texas — Aspergers101’s Samuel Allen was honored at the Texas State Capitol yesterday for his work pushing for an act that helps individuals with conditions that may affect their communication abilities better interact with law enforcement.

What this Means to Texas Drivers

Senate Bill 976 (SB 976), also known as the “Samuel Allen Law,” allows a person with a condition or disability that may cause them communication issues – such as Autism, Asperger’s, Deafness or Hearing Impairment, PTSD, Parkinson’s and more – the option to disclose that information when registering their vehicle through the Texas Department of Motor Vehicles. 

If an individual with one of these conditions has elected to make that known on their vehicle registration and then they are pulled over, the Texas Law Enforcement Telecommunications System will alert the officer prior to approaching the vehicle that the person may have trouble communicating.

The act also removes the need for a bumper sticker or license plate marking so the driver’s condition is kept private. The Samuel Allen Law, which goes into effect September 1st, will be the first of its kind in the nation.

Jennifer Allen, Founder/CEO of Aspergers101 and championing the “Driving with Autism” initiative, said that the passage of SB 976: The Samuel Allen Law is the remaining piece of the puzzle for the program she began almost 5 years ago with Texas DPS. Supported by the Texas Governors Committee on People with Disabilities, Allen’s “Driving with Autism” initiative has three (interacting) working components to better communication between Law enforcement and Texas citizens with autism or other communication challenges:

  1. Driver License – Option for Texas Drivers to place “Communication Impediment” as a DPS restriction code directly on the Driver License or State ID with state-wide marketing campaign including placing informative posters and brochures in all Texas DPS offices.
  2. Law Enforcement Training – Texas Law enforcement training modules placed directly in TCOLE (the online training for all Texas law enforcement) to better understand drivers diagnosed with autism and/or other “Communication impediments”
  3. TLETS- Option for Texas Drivers to acknowledge a “Communication impediment” upon DMV vehicle registration thus alerting officers privately through Texas Law Enforcement Telecommunication System (TLETS).

What constitutes a Communication Challenge? 

Most common diagnoses include: Autism, Asperger Syndrome, Mild intellectual disability, Deafness, Speech & languages disorders, Expressive Language Disorder, Down Syndrome, Post-Traumatic Stress Disorder, Deafness, Brain Injury or Parkinson’s Disease.

For more information on the process of registering your vehicle with Texas DMV, please contact:

Caroline Love/Division Director/TxDMV Government and Strategic Communications 512.465.4019 Caroline.Love@TxDMV.gov

Click here for more information on The Samuel Allen Law and the “Driving with Autism” Texas initiative:

More on Driving with Autism Initiative

We often see more than one emotion on the face at the same time. Watch this video to see how disbelief or irritation can be expressed through facial expressions.

Beth is watching an action-packed trailer for some TV shows and she finds the voiceover unconvincing and the scenes coming at such as fast pace she can’t keep up.

Her lowered brow and narrow eyes show that she not only disbelieves what she is hearing – she finds it puzzling to the point of irritation.

She gently shakes her head in disbelief. Her mouth is pulled up towards her nose in irritation.

Signs to note

  • lowers her eyebrows
  • narrows her eyes
  • pulls up her mouth under her nose
  • a slow shake of the head

By John Habershon

The Journey Through Autism

In everyday life, there are thousands of things happening. Some of these are big deals while some are little deals. Many people on the spectrum have a difficult time trying to differentiate “big deals” and “little deals.”; in other words, what TO make a big deal out of and what NOT TO. This whole “choosing your battles” is something that I still have a hard time comprehending.

A few months ago, I was in my third period chemistry class. My teacher was handing back a quiz that the whole class previously took. When I got my quiz back, I saw that I was marked off three points. I was confused because I checked my work multiple times and still got the same answer. Then, when my teacher recited all of the answers out loud, I proved my suspicions. I saw that my answers were correct but points were still deducted from them. Later that class period I went up to my teacher and respectfully asked him why I got points marked off. He looked at my answers and said, “Because they are wrong!”. I wrote down these three answers: “49.00, 52.00, 53.00.” He said that the correct answers were “49, 52, and 53.” I did not understand why he was marking me down points since my answers and his answers were equal. Before I go any further, the numbers were numbers of atoms, and atoms cannot be divided according to Dalton’s Atomic Theory. He told me that because I added the decimal and two zeros, I indirectly inferred that atoms could technically be divided. I was extremely upset but didn’t show it. I sat back down at my desk.

The next day, I had a meeting with my school case manager. I told her about what happened. With math and science being her strong suit, she understood my teacher’s decision. However, she also completely understood mine as well. I was so upset that I wanted to submit a district grade dispute! I would have usually gone through the department chair, but since my teacher is the department chair, that was not an option! I was so ready to file that paperwork and get my three points back! But then my case manager asked me “Is this a big deal or a little deal?”. After talking for a while, we decided that this was a little deal because it was only worth three points and, even if I got them back, I would still have to be in class for many months to come with a teacher that would dislike me because of the dispute.

These types of situations have come up in my life ever since I was a toddler and my parents and special education team have helped me come up with some things to do in order to determine if a scenario is a big deal or little deal, along with how to act on it.

I created an infographic that you may be able to use in order to demonstrate what problems are big and which problems are little. Check it out below!

On a more personal level, I force myself to reflect. This is usually hard for me to do since all I want to do is act immediately, but fortunately, I (through mistakes of acting too quickly) have learned how to stop myself. I ask myself if this particular problem is a big problem worth getting worked up over, or if it’s a smaller deal that I should just let pass over. I sometimes even get advice from my parents or special education team if my emotions are running too high at the moment and I am not able to think clearly and reflect. If I am really angry about something that I know is a smaller problem, I sometimes think about bigger problems that my peers are facing and realize how lucky I am to only be having this little problem.

If you are on the Autism spectrum: reflect, reflect, reflect! It really does pay off to slow down and calm down! I rarely make good decisions when my emotions are too high. I am learning to take the time to calm down and think things through before I decide how I should act.

If you are a parent: help your child come up with his/her own chart to help decide if something is a big or little deal.

If you are an educator: take the time to talk with your student if you notice that he or she is about to turn something little into something big when it doesn’t have to be. Help him/her to calm down and then talk through the issue. Don’t blow them off because you don’t see it as a big deal. Your student hasn’t come to that same conclusion yet!

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

This blog was last posted in 2014. As the new school year begins, this young mans viewpoint of peer exclusion helped him (and his parents) to go in another direction altogether. We hope it inspires you too. – Aspergers101

When asked about living with Autism, without prompt nor expectation of any kind, this quote came from our son Sam (then 15 years of age) during an interview for the documentary “Coping to Excelling”. 

“Don’t worry about the impairments that God included in this package….think about the good stuff in the package God gave you.”                                                                             -Sam Allen July 2011

These are Sam’s words of advice to anyone living with an impairment, disability or challenge of any kind. His words, though brief, are quite powerful for someone in their mid-teens. I share this because as a person of faith, this is a good way of thinking…maybe for us all.

Chances are anyone with High Functioning Autism or Aspergers Syndrome are not just challenged with the autism but with the comorbidities that typically go along with the diagnosis of ASD. Comorbidities such as ADD, ADHD, OCD, bi-polar or anxiety (to name a few) all challenge and can hinder daily life. We fight daily to overcome these obstacles while oftentimes losing sight of the strengths that do come with the Asperger or HFA diagnosis.

Strengths and ‘gifts’ may include that intense interest in one subject. That hyper-focus may drive family members batty but that is the very ‘good stuff’ Sam is talking about. Issac Newton, Einstein, Steve Jobs and John Nash are all said to have had Aspergers Syndrome. Their ability to focus intensely on one subject allowed them to do great things! Though Sam was never invited to his peer’s birthday parties or gatherings, his absorption in the topic of that time brought him to build a low-powered FM radio station from his bedroom as well as a high-powered gaming computer from scratch. This is a gift so go with it. If their interest happens to be the constellation, seek the stars with your Aspie by laying a blanket on the ground in the backyard at 2am. If it’s trains, go to train museums and allow them to ask the volunteers questions till their hearts content. You get the idea.

This quote now hangs by our front door so as we leave our house everyday…we are all reminded of our worth, no matter our flaws or challenges. Point being…the quote above came from a beautiful mind that is literally wired differently and who knows God doesn’t make mistakes no matter what bullying peers have said. Sam truly believes to his core not to “sweat the small stuff” but to focus on the good. I think that’s a good lesson for neuro-typicals as well!    

by: Jennifer Allen

Autism, depression, anxiety, ADHD, and developmental delays often keep kids (and parents) away from church. A new study has found children with autism are almost twice as likely to never attend church or other religious services. Families of children with other disabilities are missing from the pews as well. These are the parents who grew up in the church. Whose parents were preachers, elders, Sunday school teachers, and ladies Bible class members. These parents are aching for their children to know the same love of a church family as they did.

This certainly describes my family. Our oldest son has autism. For families like mine, it doesn’t take a study to know about the barriers preventing children with disabilities (and their families) from participating in worship. What are these barriers, and how can the church accommodate?

First, an understanding of God’s design is a great place for any church body to start. Differences can be frightening. Learning that my son’s brain is physically wired differently than that of a neurotypical truly fascinated me with God’s design!

The Lord said to him, “Who gave human beings their mouths? Who makes them deaf or mute? Who gives them sight or makes them blind? Is it not I, the Lord? (Exod. 4:11)

In Luke 14:15-24 there is a story of how the church should welcome everyone. This story shows Jesus hosting a celebratory meal where the disabled are invited guests, just as those without disabilities are. The good news of salvation is that we ALL belong.

Here are a few suggestions for creating a sanctuary for these families at church, plus some suggestions for the family seeking sanctuary.

Creating Sanctuary: Suggestions for the Church

Go out quickly into the streets and alleys of the town and bring in the poor, the crippled, the blind and the lame. (Luke 14:21)

Church is a large social gathering that is, in itself, difficult for anyone with autism spectrum disorder (ASD). The service can be a radically unwelcoming, even dangerous, place for persons with ASD in ways nobody intends. Like school or grocery shopping, church is another potentially overwhelming situation autistic kids must endure on a regular basis.

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His name is as his mission: “Maverick”. He walked into my life with something to say, he wanted to write a series of blogs on Aspergers101 with so much pain to overcome that readers immediately related to the pain and his message of hope. He has overcome and watching him give to others, as does the Sea of Galilee sources life giving waters to many, Maverick draws on the pain of his past to make a difference for the good! From his book, “Overcoming the Odds: My Journey to finding Personal Strength and Triumph”, to his drive to dispel the stigma of mental illness and minorities to all, you’ll be incredibly inspired (as are we) by learning more about Maverick through our Q & A segment below.

But first, among his life accomplishments, Maverick was recently selected to serve on the Texas Council for Developmental Disabilities as shown in a recent story from KSAT News in San Antonio.

Q & A with Maverick Crawford III

Aspergers101:  How did the opportunity to be on the board with the Texas Council for Developmental Disabilities come about?

Maverick: I was told about this role form a very special friend of mines when I was a part of the Texas Partners in Policymaking class. She told me that I would be a good fit for the board, so I gave it a try and applied. I had self-doubt due to the hallucinations and voice I hear in my head due to the abuse I suffered, and they were saying “you will never get on the board, your too stupid and quite.” But I tried my best to ignore those old tapes coming from the abuser, but it was hard to do. I often doubt myself ad do not have a whole lot of confidence, self-esteem because of the trauma I suffered, which made it hard for me to apply for this position. Anyway, I filed out this intimidating application that asks for information that I did not know. They wanted to know about my social media account information, but I’m fortunate enough that I do not post anything negative or something that may hinder my chances of getting on this board. After I completed the application than three months later, I had the interview over the phone. It was an hour-long interview that again they asked me questions that I did not know the answer to them. After the intimidating interview over the phone, a month passed, and I received a call that changes the trajectory of my life. The same person who interviewed me also told me this, “Maverick, I wanted to inform you that Governor Greg Abbott approved your application and you have officially been appointed to the Texas Council for Developmental Disabilities.” I had mixed emotions again from the old tapes from my abuser telling me how stupid and useless I was. The other emotions were relief and joy that the Governor of Texas appointed a reticent black male who has suffered so much and has autism. I was elated with joy that I was appointed because I never taught a person like myself would ever be appointed to such a high caliber board. I received a letter in the mail along with a certificate that states my name and the board I have been appointed to with the Governor of Texas signature on it. Then a month later, the University of Texas at San Antonio where I graduated from in 2018 and was awarded as the Most Outstanding Undergraduate Student in the College of Public Policy. UTSA posted the appointment to the board on their website and also on UTSA today. Also, in the same month, I a reporter with KSAT 12 news saw the article on UTSA today and wanted to do a television interview highlighting my accomplishments. The interview was a success, and I’m honored to have been appointed by the Governor of Texas but also having my story shared on KSAT 12 news.

When it comes to autism, we tend to assume those who are diagnosed are white. In actual fact, the rate of autism is similar for all racial groups – one in 110 according to current estimates.

Maverick Crawford III

Aspergers101: What do you hope to accomplish during your tenure on the board?

On disparities in Autism diagnoses

Maverick: When it comes to autism, we tend to assume those who are diagnosed are white. In actual fact, the rate of autism is similar for all racial groups – one in 110 according to current estimates. According to several studies, African American children are diagnosed at a later age and require more prolonged and more intensive treatment as a result of this. In the white community, more children are insured, have access to treatment, which is affordable and of high quality. They also have a community that more readily embraces and understands mental illness.

In the black community, it is the complete opposite. Autism is either misdiagnosed or under-diagnosed. Another aspect of the black community is that we have a hard time accepting or understanding a mental health diagnosis, such as autism. African American families may write off mental illness as being demon-possessed or bad behavior.

I do understand that there is a lack of trust in medical professionals in the black community. However, we must take the advice of professional experts and do research to help us understand the issues with our children. In this way, we can help raise our children with disabilities much better. The reason why most autism behaviors go unreported in the black community is that we do not understand or we are not educated, or even believe in mental illness, when we do not believe in mental or neurological illness, then the children have to suffer and grow up in a family which does not fully understand their needs and parents who are unwilling to accept or learn how to deal with those issues.

Educators, doctors, and other practitioners who are experts on autism need to appreciate the gravity of misdiagnosing, under-diagnosing, or non-treatment of an autistic child. According to various research studies, black children suffer from a greater degree of post-traumatic stress disorder (PTSD ) due to environmental factors. The environment for most black children involves poverty, crime, lack of resources, and so forth. When it comes to autism, the people who are better off financially can get access to the best services rather than the ones who are living in poverty. The less well-off children do not have access to adequate treatment.

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In the summer of  2017 Aspergers101 launched a Summer Series on Autism in conjunction with the San Antonio Public Library System. WOAI-TV live-streamed all four conferences where area experts on Autism participated in a panel discussion at the conclusion of every power-packed workshop.

Kicked off by Ron Lucey with the Texas Governor’s Committee on People with Disabilities and announced by Ramiro Salazar, Director of SA Public Library System at the Press Conference, it was a huge endeavor that allowed free access to information on Autism.

This is community and teamwork at its finest!

We want to share all four sessions with you.

The four workshops are as follows:

  1. Diagnosis
  2. Social Development
  3. Choices in Education and
  4. 26Independent Living

Press Conference Announcing Aspergers101 Summer Series with the San Antonio Public Library  Asperger Syndrome: From Diagnosis to Independence.
May 3rd 2017 10:30a San Antonio Public Library Downtown

SUMMER SERIES VIDEO LIBRARY

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Teachers, parents and partners come to me asking my help to understand the behavior of someone with Aspergers. Usually they’re frustrated by behavior of some kind that’s perceived as resistance to what seems to be needs and expectations that are “normal,” or neurotypical. The neurotypical teacher, parent or partner wants to have things go more smoothly.

In turn, the individuals with Aspergers (neurodiverse) are often frustrated by the expectations they face which seems to suggest a basic lack of understanding of their needs. The assumption is that if those who are neurotypical “got it,” expectations would be more realistic and problems such as difficulty transitioning, social anxiety and sensory issues would be taken into account. They may feel that their meltdowns are a direct result of their environment.

I find myself in the role of translator of the perspective of the neurodiverse individual to the neurotypical parent, teacher or partner, and the translator of the perspective of the neurotypical to those who are neurodiverse. In my role as translator, I can be free of judgments.  I’m simply trying to help people understand each other. 

Many neurotypicals are grateful to understand a neurodiverse perspective. However, I’ve also been told that clarifying the situation from the neurodiverse point of view is simply making an excuse for the neurodiverse person’s behavior. I’m excusing rather than explaining.  I’m not doing what’s wanted, which is to get the neurodiverse individual to stop acting neurodiverse and start acting neurotypical.

The idea that the neurodiverse perspective is only an excuse rejects the reality of the needs of the neurodiverse person. It’s saying that these needs aren’t real but represent oppositionalism, avoidance, an attitude problem, or even selfishness. 

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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

Aspergers101 for the Parent

As neurotypicals, disappointments come early in life. We learn quickly that all we desire is not all that is intended for us. We learn, through a trail of unrealized dreams, to be content with our lot or find another pathway toward our goal(s).

Having a child on the autism spectrum redefines the above lesson. Managing your ASD child’s crushing blow of disappointment comes with a different manual altogether. When it comes to disappointment through deceivers and manipulators…those with an Autism Spectrum Disorder are susceptible to exploitation. ASD is, at its core, a disorder of social functioning and cognition. Just saying old phrases like, “That’s life” or “Pull yourself up by your bootstraps” or “That’s how the ball bounces” makes no sense to them and sets them off into further confusion and strife. Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected. Knowing how to help them is first to understand that your autistic child is wired differently and being lied to will take more than standard sayings to overcome. In other words, like everything else in parenting a child on the autism spectrum, it may take a well thought out talk but you can relieve your child’s mind….and yours by a few steps.

Their brain is wired differently so their expectations and heightened sense of right and wrong may bring on pain when the expected turns unexpected.

-Jennifer Allen

Manage their Expectations

In looking back on raising a son on the autism spectrum, this was and still is an everyday activity. Managing their expectations takes time, communication and preparation. My part as a parent has waned a bit as our son ages, as I am beginning to see how he attempts to prepare himself for daily potential challenges. This preparation begins with a comforting knowledge of facts. Let me give an simplified example but one that you can plug most any upcoming event into. Remember, this is just about managing the small unknown(s). We will get into the larger scenarios later.

Here is the situation: Church is going to be extra crowded on Sunday because it’s Easter Sunday. We then think of the challenging ramifications that overcrowding may bring and discuss solutions.

The Challenges Discussed:

  1. We may not be able to sit in the same pew/area we usually do
  2. There may be louder sounds with more children in the service
  3. It may take us longer to go eat lunch as crowds are larger during Easter Sunday at restaurants

So we go over the potential challenges and discuss the following choices to avoid disappointment, expectations or meltdowns:

The Solutions Discussed:

  1. Let’s leave extra early to get our usual seating -or- would we take the opportunity to sit elsewhere and see what that is like?
  2. With the onset of more crying babies, would you want to use noise-cancelling headsets? Go to foyer if it gets too loud? Other suggestions?
  3. Since it may take longer to get to a restaurant can you set in your mind it might take 30 minutes longer than usual to eat lunch? Would you rather forego crowded Easter Sunday restaurant crowds and eat at home?

The challenge/solution exercise helps to prepare your child for what disappointments might be just ahead. The less amount of surprises the better for a factual mind. This activity prepared our son throughout his young life and now we are starting to see him work through this for himself as an adult. This practice certainly helps prepare for the unexpected but what happens when they are promised something and it’s never delivered. Or a blatant lie is told to them and they keep trusting the source will do as they say but you realize they never will? In other words, how to you explain to the pure believer that the world is corrupt and sometimes people are going to lie to you. Most deal with this topic when their children are very young, but to the parent of a child with Autism it’s ongoing. You know they take everything literally and hidden meaning or ulterior motives is a concept most difficult to grasp. For the autistic brain it’s confusing, painful and sometimes paralyzing.

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