Apart From the Crowd: Isolation in the Early Years of Diagnosis

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

The Either Or Trap

I have three questions for you…

1. How many times a day, a week do you find yourself with a big old stressful decision?

2. How many of those decisions are simple and completely straight forward?

3. How many times does it feel like you’re saddled with two crappy choices?

beliefs, aspie

The human brain is fascinating and capable of many feats! It’s also prone to getting stuck. When making decisions, one of those sticking points is the Either Or Trap. You know what I mean, EITHER you do this OR that. Here’s why this is oh so common: your brain gets fixated on your habits of perception – the way you see life, people, situations, and then shuts down to any other options. It’s as if there really are only these two options. This is problematic because you literally can’t see other possibilities so you most likely aren’t going to seek out more solutions and people with opposing perceptions. You then make EITHER this decision OR that decision. 

This can feel oddly good at times, like any habit can, yet you also know the sweet freedom that comes from breaking a bad habit.

How can you avoid the Either Or Trap?

  • Acknowledge the tendency for the TRAP
  • Ask what if these didn’t work…what else…
  • Seek out people who think differently than you 
  • Set a timer – mind dump as many possibilities as you can saying AND
  • Ask what you really want to see –  as in wouldn’t it be GREAT IF…

You can absolutely expand your perception. This expansion cultivates more options that are actually connected to your purpose. You then have the freedom to experiment.

Let’s look at an example to see it in action

Your child doesn’t like trying new things – change can be tricky for them because it’s such an unknown. Unknown has been code for it’s scary and must be avoided. Yet, you know it would be helpful for them to expand their repertoire. And necessary.

They don’t wanna so they yell, argue, heavily complain, and shut down.

You EITHER:

Start to think it’s not worth all this extreme hassle and pressure so you let it go…

With that, may come it’s all on them – go do what they want to do – fine, whatever.

OR:

You think they have to learn sometime so come hell or high water now is the time!

With that, may come it’s all on them – sink or swim, baby.

It often comes down to extremes.

The Either Or Trap is all about two extremes.

What if there were other options? I assure you there are…

It’s just that in the heat of the moment with your pattern of survival it’s hard to see – literally your brain has defaulted where you can’t see beyond the two extremes.

Let’s look at expanding perception

  • Define what’s blocking the new experience attempt – what is IT (anxiety, disinterest)
  • Address the specifics – get to the root of fear with AND what else – not the symptom
  • Develop parameters – what will the attempt look like, how long, and debrief plan

Let’s look at potential options

  • Bust out your calendar together – what are the daily, weekly tasks and activities?
  • How much calendar time builds the skills and attitude you actually want?
  • What do you actually want for them? for you? for siblings? for whole family?
  • Brainstorm topics and situations they know nothing or very little about.
  • Choose a topic or situation to experience for a set period of time experiment.

Clarity of focus about what you actually desire breeds connection with what you actually want to do. All the doing and trying without connection keeps a cycle of doing and trying. This breeds fatigue, frustration, and eventually forget-it-ness.

Understanding Comorbidities

Top of the Spectrum News

As many as 85% of children with autism also have some form of comorbid psychiatric diagnosis. ADHD, anxiety, and depression are the most commonly diagnosed comorbidities, with anxiety and depression being particularly important to watch for in older children, as they become more self-aware. Understanding and treating psychiatric comorbidities are often far more challenging than the Aspergers/Autism itself as discussed in this edition of Top of the Spectrum News.

The diagnosis of comorbidities can be challenging because many people with ASD have difficulty recognizing and communicating their symptoms. It takes time to uncover the cause of a meltdown or aggravation but to aid you in your search, we listed the most common comorbidities below:

  • Epilepsy/seizures
  • Sleep disorders/disturbance
  • ADHD
  • Gastrointestinal disorders
  • Feeding/eating challenges
  • Obesity
  • Anxiety
  • Depression
  • Bipolar disorder

Top of the Spectrum News is a product of Aspergers101.

The Less Traveled Path to Christ: 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 fathers were preachers, elders, deacons and whose mothers were Sunday School Teachers and Ladies Bible Class members.  These parents of children with disabilities are aching for their child to know the same love of a church family as they did.

I can vouch for this describes my family. Our oldest son has Autism. For families like mine, it doesn’t take a study to know that there are often barriers that prevent children with disabilities (and their families) from participating in worship. So what are the barriers and how can we, as parents and church leaders, accommodate by emulating Christs ministry to all?

Church is a large social gathering that in itself, difficult for anyone with autism. The service can be a radically unwelcoming, even dangerous, place for persons with ASD in ways nobody ever intends. Sensory, Anxiety, etc. It is another potentially overwhelming situation (like school, grocery shopping, etc.) that is asked of autistic kids on a regular basis. Unlike most people, they don’t leave church feeling refreshed and renewed to face the week ahead. 

As he passed by, he saw a man blind from birth. And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” Jesus answered, “It was not that this man sinned, or his parents, but that the works of God might be displayed in him.  – John 9:1-3

As a parent of a child with a disability, know that you have been prepared for the road less traveled. God will not give you more than you can bear and He (the Almighty) prepared you, as he did your child, for this journey.

Below is a statement my son Samuel said when he was very young and we have it printed and hanging by our front door:

Don’t worry about the impairments that God included in this package…think about the good stuff in the package God gave you.

Samuel Allen

I would agree with Sam. As medical science begins to unravel and understand the brain and the effects of autism, we as a society and especially as the Church, should subside our fear of ‘different’ and embrace God’s beautiful design in worship together. On the other hand, parents should take note of a saying I’ve often heard Dr. Temple Grandin state: “Autism is not an excuse for bad manners.” Parents need to be cognisant not only of their child and their needs, but the ability for others to hear the sermon thus keeping the focus on God.

On Tuesday, September 17th, 2019, I was honored to have presented a lecture at my alma mater, Abilene Christian University. It was ACU Summit 2019 and my topic given: Autism and the Church today. With the overall Summit theme of “Sorrow, Hope & Joy” (a tribute to the Psalms) my heart knew (all too well) all three emotions and suspect yours does too. I offer to our Aspergers101 readers the entire presentation and downloadable tri-fold brochure if this message resonates with you or someone you love.

May you know you are never alone and as with all things…the answer resides in living like Christ. In the following presentation, we explore his teachings and apply them toward raising a family with a disability in the church today.  

Below is a downloadable tri-fold brochure you may want to share with your church or autism/parent organization.

Inclusion and compassion was everything Christ personified on earth. I think there is a strong correlation for both the church and the family seeking Gods unconditional love.

I hope the above materials offer insight and some steps toward inclusion and above all…a comfort to know you are not taking your less traveled path alone.

by: Jennifer Allen/Founder & CEO Aspergers101

Upcoming Event: Jennifer Allen to Speak at ACU Summit 2019

“The Less Traveled Path to Christ: Families, Autism and the Church Today”

Autism, depression, anxiety, ADHD, and developmental delays often keep kids (and parents) away from church. The Great Commission instructs us to go and preach the gospel to all nations, to all people … and as for those with disabilities, we must put aside our fear of “different” by first understanding the uniquely wired brain and then providing accommodation(s). Jennifer Allen will share her family’s personal journey of having a child diagnosed with autism and how the less traveled path to Jesus, though oftentimes rocky, offers beautiful vistas that neurotypicals seldom witness. This session is for the church to better understand the challenges that face these families along with suggested accommodations and especially for the parent torn about church and their children.

THE FACTS:

When: Tuesday, September 17th

Time: 9:30a – 10:15a

Where: ACU Summit on the Campus of Abilene Christian University 

               ACU Biblical Studies Building 1201850 Teague Boulevard

               Abilene, TX 79601 – Room 120

Cost: Free

Go to ACU Website for full information on ACU Summit 2019  or view the full ACU Summit 2019 Program here. Note: Jennifer Allen’s presentation: The Less Traveled Path to Christ: Families, Autism and the Church Today is listed on page 23.