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.
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.
Neurological pathways fire differently in Asperger patients than that of a typical brain function. It has become clear that individuals who are diagnosed as High-Functioning Autistic or Aspergers receive their gifts and struggles from a physical medical basis not behavioral, as you may have been pressured to believe. Once we understand exactly how the challenges occur, we can begin to lead our loved ones with Aspergers on the path from coping to excelling.
We interviewed experts in the field of Autism to offer you a quick read on understanding High-Functioning Autism and Aspergers Syndrome.
“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.
ACU Biblical Studies Building 1201850 Teague Boulevard
Abilene, TX 79601 – Room 120
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.
A meltdown is scary and lonely. A change in routine can be enough to tip the scales in sensory input and cause what is titled a “meltdown” where a person with autism or asperger syndrome temporarily loses control due to emotional responses to environmental factors. They aren’t usually caused by one specific thing.
Triggers build up until the person becomes so overwhelmed that they can’t take in any more information. 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.
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.
Meltdowns: What Not to Do
My meltdowns can be very frightening and confusing for those around me. I work very hard to appear as capable and composed as possible throughout each day, so when I finally lose it, people are shocked to see me act so “autistic.” I cry, scream, break things, flap my hands, and pound my fists against my head. I haven’t found the perfect remedy for my meltdowns, but I do know what makes them far worse…
If I am having a meltdown… – DO NOT become angry with me or raise your voice.
Autistic meltdowns may be frightening to observers, but at their most intense, they are nothing less than pure psychological torture for the person experiencing them. I feel as if I am caught in a war zone, terrified for my very life. My senses are on fire and I have very little control over myself. I may feel threatened by intense emotional displays. This is very dangerous.
– DO NOT attempt to restrain me. I understand that my tantrums are scary, as I’m well over six feet tall, but you must remember that I am far more frightened than you are. I would never intentionally hurt anyone, but if you approach me in a hostile manner, or attempt to use any force without my permission, I may lose the last bit of self-control I have.
– DO NOT ask me what is wrong. Trust me, when I’m banging my head into the wall I do not want to discuss my emotional triggers.
– Most importantly, DO NOT tell me to “snap out of it.” Trust me, I would if I could. Don’t patronize or belittle me by acting as if I could control myself if I only tried harder. This is a good way to make the situation ten times worse. You may know me from my column here on WrongPlanet. I’m also writing a book for AAPC. Visit my Facebook page for links to articles I’ve written for Autism Speaks and other websites.
I would like to add one more . . . this is not the time to say “Use your words.” As the brain escalates in a meltdown, the ability to be rational and articulate diminishes.
So now for what TO DO?
During a meltdown a child most needs the opportunity to relax. Therefore, you should respond patiently and compassionately as you support this process. Offer choices of relaxing activities, perhaps through the use of a choice board. If the person is not able to make a choice, then simply present a pre-determined calming activity. Often, this might be an activity that incorporates a strong interest [e.g. video of SpongeBob or favorite song/music].
In some cases, it might be best to offer a way out of the situation through escaping the current stimulation of the environment. Again, a pre-determined location might be another room or other safe place [e.g. chill zone, motor lab, etc.]. However, it might be difficult for the individual to transition to another location if the meltdown is at its peak.
If there are others in close proximity, then it should be part of the plan to move them to a safe place.
Most importantly, do everything possible to keep the individual safe from him or herself. If they engage in head banging, protect their head by placing a pillow or bean bag between them and the floor or wall.
As you can see, there is little to really do during a meltdown. Again, all efforts should be made to PREVENT a meltdown.
We may think we know what anxiety looks like (shaking hands, shallow breaths) and what it sounds like (“I can’t do this. What if I can’t do it. What if?…What if?…), but what does anxiety feel like? Often, we focus so much on the racing thoughts and emotions that come with anxiety, we forget to recognize how physical anxiety can be. In fact, you can feel physical effects of anxiety without even realizing it’s anxiety that’s causing it.
1. “When I get into high anxiety, sometimes out of nowhere, I get GI [gastrointestinal] symptoms. Constantly going to the bathroom. I have cramps and abdominal pain. It’s tough because there is nothing I can do but just try to wait it out.” — Michele P.
2. “Does anyone else find themselves antsy after a big panic attack where you can barely sit still and then for the next couple days, you’re completely mentally/physically exhausted? I feel like everything is just too much and I can’t move.” — Kristen G.
3.“It starts with my heart racing… so fast I can hardly breathe. Then the nausea. It is unrelenting. The nausea makes my anxiety worse which makes my heart race, which makes me more nauseous. It’s all a vicious cycle, and it is so hard to escape.”2 — Rachael J.
4. “In the aftermath of a panic attack, I often feel bone-chillingly cold. It doesn’t matter what time of year it is, and no jacket or blanket helps. I just have to ride it out until it goes away.” — Monica M.
You’ve probably heard the story that Einstein – whose name is synonymous with genius – didn’t seem destined for much when he was a small child. He was years behind other children when it came to learning to talk, he did horribly in school. It seems that Einstein’s brain just worked differently than most other people’s. And many people these days are saying that Einstein was probably autistic – one of them is Temple Grandin.
“Everything in my mind works like a search engine set for the image function.” – Temple Grandin in 2008, from an oral history at Colorado State University.
Temple Grandin is a professor of animal sciences who’s worked in the meat industry to invent kinder ways to lead cattle to slaughter. She’s also autistic – the high-functioning version known as Asperger’s Syndrome. Autism, in case you don’t know, is a brain disorder that tends to affect people’s social skills, like the ability to read facial expressions and body language, but it can also mean extraordinary talent in math, music and the visual arts.
Temple Grandin has become something of a celebrity of autism. She’s written books, given TED talks, and she’s been around the world to speak on the subject. Claire Danes has even played her in a movie about her life.
As part of our special series, The Experimenters–where we uncover interviews with the icons of science, technology, and innovation…– we found this interview in the holdings of Colorado State University, where Temple teaches. In this conversation, Temple’s at her best, explaining for the rest of us what it’s really like to have an autistic brain and how Einstein’s not the only genius who could have been dismissed for being different.
Jewelry Designed to Impart how it “Feels” to have Autism
One of the highlights when Sam and I speak at autism conferences is the reaction to a simple painting he had created depicting how it ‘feels’ to have autism. His interpretation offers a great insight and a relate-ability satisfying most neurotypical minds. As a result to the overwhelming positive feedback…we incorporated Sam’s painting into our logo and now have made it into jewelry to wear!
Make no mistake, this is a fundraiser. 100% of all proceeds will directly fuel the cost to provide Aspergers101 as an ongoing free resource and it’s outreach! You can read more about our work at the end of the blog but the focus of this blog is on you and our most uncommon path of raising a child with Autism/Asperger Syndrome.
The Path Less Traveled
The Autism Charm was created out of experience. Both mine and Sam’s journey, though unique to us, is shared by everyone who has a child diagnosed with Autism or Asperger Syndrome. It’s a path less traveled. Early on, a parent finds themselves a bit of an Indiana Jones forging their way through the bramble and uncertainty of EVERYTHING…but you forge on. Years of working together seems each grade advancement was a huge accomphlishment and for a moment, a plateau to rest until onward and upward yet again. You know the path. It was on this isolated journey I met a friend who had, up until that time, also forged it with her son…alone. We formed a most valuable, immediate friendship that felt like an exclusive club! There were others out there and that felt good.
The Parents Bond of Autism
It was from this newly formed friendship that I realized our paths should not be forged alone. If anything, being down the path a bit my family and I then decided to reach out to help others just starting out. Knowledge was power and there is nothing more powerful than a mothers bond of a child with autism…we know each others struggles! Do you find yourself immediately drawn to another parent whose child is on the spectrum? An empathy and fierce loyalty is instant! To remind me of this bond and that I am not alone as I feel, my friend gave me a bracelet that I’ve worn out! It has a symbol of autism that though only she and I wore, that was a daily reminder that I can get through this….there are others!
The Autism Charm Design
So now we, Aspergers101, have taken the logo Samuel designed and made it into a charm bracelet or necklace! We hope you wear it with pride and know that you are never alone in your struggles. Of course, it is through my families faith in God that offers us peace but good to be reminded that others tread the brambled path of Autism. I’ll repost Sam’s description of his design:
Why are there higher rates of depression in those with AS? There may be some genetic predisposition to depression for some, but this doesn’t explain most cases of depression. One reason for depression is isolation and loneliness. Despite the misconception that people with AS prefer being alone, research shows that many with AS want friends. Children and teens with AS are often lonely and feel their friendships aren’t “quality.” They’re looking for company, safety and acceptance to give them a sense of confidence. Those who have friends may have a lower tendency towards depression. However, many with AS who experience social anxiety or lack social skills in joining, starting, and maintaining friendships don’t have the tools to have the friends they want.
Another reason for depression is the experience of being bullied.
Studies have suggested that a majority of those with AS experience bullying. This isn’t surprising given the drive towards conformity and the emphasis on social status among middle school children in particular, but also among high school students and even older individuals.
There isn’t a cultural norm of tolerance of neurodiversity, or even of most kinds of diversity.
Qualities of those with AS that engender bullying are
lack of awareness of social cues;
interests or behavior labeled ‘odd’;
AS individuals have difficulty flexibily and astutely responding to bullies. Some with AS tend to be submissive and anxious in response, which empowers bullies to continue. Still others lash back, which gets them in trouble.
In my own practice, my Asperger’s teenagers and young adults have often been bullied and carry the wounds of bullying deeply ingrained in their sense of self-esteem.
EXPLAINED: The New Process and Form(s) for Registering your Vehicle as a Person with a Communication Challenge in Texas
Effective September 1st 2019: The Samuel Allen Law (Senate Bill 976) enacted by the 86th Legislature, adds Transportation Code Section 502.061, allowing an applicant to voluntarily indicate at the time of initial registration or registration renewal that they have a health condition or disability that may impede effective communication with law enforcement.
Present the completed certification below to your local county tax assessor-collector’s office when applying for initial registration or renewing registration. Presentation of the completed certification will authorize the addition of a communication impediment notation to your motor vehicle record. This notation will inform law enforcement you have a health condition or disability that may impede effective communication with a peace officer.
The Samuel Allen Law will allow a person challenged with communication, (Autism, Asperger Syndrome, Deafness, Hard of Hearing, PTSD, Parkinson’s disease, Mild Intellectual Disability and more) the option for disclosure when registering their vehicle through the Texas DMV. Communication Impediment will be privately placed in the Texas Law Enforcement Telecommunication System (TLETS) thus alerting the officer of the challenge PRIOR to approaching the vehicle in a pull-over scenario. This unprecedented law will not only save lives by alerting law enforcement for better communication, but will also keep the diagnosis hidden from public scrutiny as opposed to bumper stickers or license plate designations. Note: Texas DPS already offers “Communication Impediment with a Peace Officer” as an optional restriction code on State Driver License or ID.
Form VTR-216 (below) must be completed by a licensed physician if the applicant has a physical health condition or a licensed physician, licensed psychologist, or a non-physician mental health professional if the applicant has a mental health condition. Form VTR-216 is available online at www.TxDMV.gov or you may click on the form below to download here.
If you choose the option to disclose a communication impediment to be placed privately in the Texas TLETS, you will need to submit Form VTR-216 at time of vehicle registration renewal with the Texas Department of Motor Vehicles. The Samuel Allen Law takes effect September 1st, 2019 in the state of Texas.
What constitutes a Communication Challenge (Impediment)?
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
Attention deficiency can become a barrier for many things to many people. Children diagnosed with Asperger’s Syndrome often times are also diagnosed with Attention-deficit/Hyperactivity disorder and may have a hard time concentrating in class, have a hard time sitting still during dinner, or may lack consistency. Adults diagnosed with ADHD may struggle with organization at work or home.
ADHD is defined by the Mayo Clinic as a chronic condition that affects millions of children and often persists into adulthood. ADHD includes a combination of problems, such as difficulty sustaining attention, hyperactivity and impulsive behavior.
Besides proper medication, practicing Yoga can be another support to help ease the mind and relax the body.
Yoga is an ancient art based on a harmonizing system of development for the body, mind, and spirit. Practicing yoga can help in slowing down the mind, relaxing the body, and becoming aware with your immediate present. In other words, for someone whose mind is racing, has a difficult time concentrating, and has extra energy, yoga can be a good support to help in reducing these emotions.
The question is how do I even begin doing yoga? Well, get ready because here are your first 3 steps into beginning your journey to calmness and relaxation!