The Path Less Traveled: Families, Autism, and the Church Today

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.

Meet Maverick: Changing the Trajectory of Mental Health

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.

From Diagnosis to Independence: Four Workshops on Aspergers from the Experts

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

What is ABA Therapy?

Applied Behavioral Analysis

So, what exactly is ABA, or Applied Behavioral Analysis?

Close-up view of pencils and African girl writing

ABA is an intervention therapy that specifically addresses behavior. ABA is one of the proven best practice therapies for children on the autism spectrum, including Aspergers. Thousands of research articles have documented the effectiveness of ABA in individuals with autism across behaviors, settings, and specialists. The behaviors that ABA seeks to address could relate to academics, communication, challenging behaviors, and other daily living skills.

ABA, as a field, seeks to understand and improve human behavior—the goal of many disciplines. What sets ABA apart from other fields is the approach and process. Professionals trained in ABAor behavior analysts—break down each component of interactions to understand this behavior.

In ABA, behaviors are analyzed by looking at antecedents, behaviors, and consequences. These are known as the ABCs of ABA.

  • A = Antecedents (what happened before the behavior)
  • B = Behavior (the behavior targeted for intervention)
  • C = Consequence (what happened after the behavior)

For example, a child sees a box full of cookies on the table that his mother just took out of the pantry (antecedent). He asks her, “Mom, can I have a cookie please” (behavior). His mother tells him that he must eat his omelet before he can have a cookie (consequence).

Behavior analysts believe that adaptive and maladaptive behaviors are learned, and can be changed.

Basic principles of ABA state that when behavior is followed by something pleasant, it will occur more often in the future. In the same way, when a behavior is followed by something unpleasant, it will occur less often in the future. Behavior analysts utilize these principals of behavior to understand and improve human behavior.

Here is a general process for developing interventions utilizing ABA:

  1. Select the target behavior that is socially significant, observable, and measurable
  2. Clearly and specifically define this behavior
  3. Utilize principles of ABA to develop interventions
  4. Collect data in a way that demonstrates the changes in the target behavior are due to the intervention implemented and determine the impact of the intervention
  5. Make educational/therapeutic decisions based on the data.

It is key that an ABA intervention be effective. Meaning, the changes produced in the behavior are significant enough to make a difference in the person’s life outside of the context in which the intervention was implemented.

Now you know a little bit about the basics of ABA as a field. Do you think this process would apply to your child?

By Berenice de la Cruz, Director of Training and Research at Autism Community Network

Sources

Baer, D. M., Wolf, M. M., & Risley, T R.(1968). Some current dimensions of applied behavior analysis. Journal of Applied Behavior Analysis, 1, 91-98.

Cooper, J. O., Heron, T. E., & Heward, W. L. (1987). Applied Behavior Analysis. Prentice-Hall: New Jersey.

Alone Time for Teens with Aspergers is Crucial: Allow Them Their Space

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.

Depositphotos_9398452_s-2015

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

Counteracting Anxiety, Depression, and Social Withdrawal in College

Success for Autism in Higher Education

Researchers investigated possible predictors of first year success for college students diagnosed with autism spectrum disorders.

college success

Eleven freshmen students enrolled at two universities. Each student received specialized supports for ASD at their respective colleges and participated in periodic assessments of social, emotional, and academic functioning. Investigators examined factors related to academic achievement, levels of anxiety and depression, life satisfaction, college adjustment, and social functioning.

Initial results of this ongoing investigation demonstrated:

  • Adjustment to college was negatively correlated with internalizing symptoms (such as anxiety and depression, and social withdrawal). Students with higher levels of internalizing made poorer adjustments to college
  • Students with higher levels of internalizing symptoms also rated themselves lower in terms of life satisfaction
  • Students with higher levels of anxiety and depression at the beginning of college had lower mid-term GPAs
  • Students who reported better adjustments to college had higher GPAs

Anxiety and depression are highly correlated with a number of negative outcomes in the study (such as lower grades, life satisfaction, and social adjustment). Because of this, investigators identified early “screening for and targeting symptoms of anxiety and depression through therapeutic interventions” as critical to supporting college students with ASD.

Students who struggle to adjust in college may experience internalizing symptoms and academic difficulty. So investigators concluded that college students with ASD may also benefit from specialized supports at the beginning of their transition into college.

Lead investigators presented this information as a poster session at the 2010 International Meeting for Autism Research (IMFAR). This was held during the International Society for Autism Research conference in Philadelphia, PA. Information from the session may be found at this link:

https://imfar.confex.com/imfar/2010/webprogram/Paper7332.html

by Dr. Marc Ellison

Managing the Crushing Blow of Disappointment & Lies

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.

Does My Child Have Asperger Syndrome?

Informal Childhood Developmental Checklist

Our son has Asperger Syndrome. To get the diagnosis didn’t come easy and the path to that diagnosis was rocky to say the least. That was over 12 years ago and still, the following checklist we received from our school district is the best heads-up to having Aspergers Syndrome that I’ve seen to date. It cuts to the chase. Though only meant as a ‘checklist’ remember this is not an official document and only mean’t to flag a strong suspicion of Aspergers Syndrome. A doctor or trained therapist would need to make that call, however; if you are looking for a guideline of sorts….it doesn’t get much better or black and white than the form below. It was spot on for us describing our son Sam. We’ve also put it in a downloadable format at the bottom. May it lead you towards illumination! -Jennifer Allen/Aspergers101

Samuel Allen/Aspergers101 Spokesperson

Informal Childhood Developmental Checklist

Social Interactions

Yes      No

____    ____       The child prefers to play alone.

____    ____           The child is rarely invited by others to play in the neighborhood or to participate in activities outside of school.

____    ____           The child’s social interactions and responses are immature, not keeping with his/her age or his/her cognitive abilities in other areas.

____   ____            The child has difficulty interacting in group settings.

____   ____            The child does not play with other children as expected: he/she may not appear interested in their games, or may not know how to join in.

____   ____            The child appears to be vulnerable to teasing, bullying and being taken advantage of by others.

Behavioral Observations

Yes      No

___      ___            The child has difficulty understanding the effect his/her behavior has on others.

___     ____            The child has a significant amount of difficulty taking the perspective of another person, even when it is explained to them.

____   ____            The student has overwhelmingly limited interests in things such as video games, superheroes, cartoon characters.

Tips for the Asperger Driver When Being Pulled Over by an Officer

AS101 Driving with Autism

For many with Autism a fear of driving stems from anxiety that can result from being pulled over by an officer of the law. In some cases, fear of just that very scenario is the reason many never pursue obtaining their driver’s license.

pull over, police officer

Good communication skills and actions are key to making an already stressful situation go without incident for anyone, but with the diagnosis of autism, Aspergers, or speech impediments misinterpretation is almost a certainty. Dr. Louise O’Donnell, who specializes in Clinical Child & Adolescent Psychology at UT Health Science Center in San Antonio Texas, offers suggestions to make a ‘pull-over’ go without incident.


Dr. Louise O’Donnell/UTHSC : Part 1

Things to remember when you are pulled over: