Neurotypical Mom, as a Special Needs Mom your world is foreign to me. Rotating seasons of soccer, cool moms club, overnight parties, and college sororities comprise a universe outside my own. Church youth camps and activities that have the word “team” in them are just painful reminders that I have a special needs child. Your child is included, mine is not. And I must find a way to turn these negatives into positives for the sake of my child’s future.
Raised competitive from a small town with sports and cheerleading in a world that didn’t include Autism makes it even more difficult to confess these surprising emotions. I’m not a whiner but what I want to do is shout “It’s not fair!” The only ones that hear or seem to want to understand this alien and painful feeling are what I’ve grown to refer to as special needs moms.
Many parents experience the “picky eater” from time to time. As with most differences on the autism spectrum, the difference in describing the picky eater with autism can be found in the intensity or degree. Because of this relative understanding, one might be critical of the parent with a child with autism and tell them they just need to make their child eat food that is more nutritionally sound. But the “picky eater” is really just someone with sensory processing issues in regards to taste.
I was in a meeting where the educators and the parents were discussing the narrow food choices of the daughter as being a nutritional and even behavioral concern. At one point, one of the educators told the parents that she, herself, had a picky eater, and that she just had to lay down the rules and “force” the issue. The teacher proceeded to tell the parents that they should do the same thing. The mother became upset very quickly and in a raised voice told the educator, “Don’t you think I’ve tried everything to make her eat healthy?! I’ve had food spit out at me more times than I can count, and I’ve had the kitchen torn apart after a food-related meltdown . . . I’ve done it ALL!!!”
I am trying to make the point that we are talking about a matter that goes beyond “picky eating”.
Many school students carrying the diagnosis of Asperger’s Syndrome exhibit challenges in the area of social interactions and social skills. These social difficulties are worrisome for parents and family members who look for supports to address these challenges. Struggles in the school setting often center on their child’s inability to “fit in” with other students or an inability to grasp social expectations from their teachers and peers. Additionally, their child’s feelings of high anxiety and stress can make the learning environment challenging for them and the people around.
Over time, I’ve listened to concerns from parents and teachers regarding a student’s lack of understanding when it comes to social situations in the classroom environment. This often leads to isolation and the need for behavior support.
There is information in the literature that suggests both adult and peer mediated techniques to teach and build social skills in children with autism.
Please help us welcome Ethan Hirschberg to the Aspergers101 family of bloggers! Ethan will offer his insights to living on the autism spectrum first-hand and we think you will be inspired, informed and delighted as much as we are! In his first blog with us, his Mom answers questions basic to families facing the diagnosis of autism.
My parents have been my rock throughout my journey with Autism. Both of them have helped me so much and I can never thank them enough. All I can do is love them! My mom and dad are the best parents that I could’ve ever had. They love, support, advocate, and care for me and my brother. If I can be half of a person that they are, I’ll be just fine! Before I publish my next blog post about some of my challenges during the winter holidays, I interviewed my mom and asked her a few questions about her personal experiences with caring for me (a teen on the spectrum).
Question: When did you find out that Ethan was diagnosed with Autism and how did you feel?
“I found out when Ethan was two and a half. Ethan had started seeing a speech therapist when he turned two because his speech was very slow to develop and no one besides his very close family who saw him frequently could understand him. During one of his speech sessions, the therapist recommended that he get evaluated to determine if there was a ‘more global explanation’ for his difficulties. A full developmental evaluation was performed and during that appointment, we were told about his diagnosis. I was shocked and yet at the same time knew that this explained the other difficulties that he was having. I immediately went into treatment mode to get him started with all of the therapies that he needed. It wasn’t until six months later when I was able to stop working and focus solely on Ethan that I began to deal with my feelings regarding the diagnosis. I cried, worried, and grieved a lot and spent many very late nights on the computer doing research. I was heartbroken because I wasn’t sure what his future and quality of life would be like. I was very lucky to have lots of close family and friends to help me get through this very difficult time.”
Question: What made you suspect that he could be on the spectrum?
“I noticed lots of little things while Ethan was an infant but didn’t put everything together until Ethan’s speech therapist nudged me into it. When Ethan was three months old, his pediatrician had to be changed because the doctor talked loudly and Ethan would just scream whenever Ethan was in his presence. My mom and I also attempted on several occasions to get handprints and footprints of him in those little clay keepsake kits, but Ethan would always clench up his hands and feet and we could never get good imprints. There were many other instances throughout his first two years which made me realize that he was a very sensitive child, like not liking certain foods, not liking to walk on grass or sand, etc. Between the age of one and two he started walking on tiptoes, was more rigid, would withdraw when new people would approach him, and began to have a lot of extreme tantrums, much more than a typical toddler. While Ethan was delayed in a lot of areas, he also had many skills so I didn’t quite put everything together until an outside source urged me to take a closer look.”
Question: What has been the worst part during Ethan’s life?
“There were two worst parts that I recall most. Between the ages of three and five, it seemed as if every single day was full of many tantrums and meltdowns, a lot of stimming, a lot of frustration and anxiety on Ethan’s part, and constant struggles over much of the day. The other extremely difficult time was when
Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses.
Some people with sensory processing disorder are over sensitive to things in their environment. Common sounds may be painful or overwhelming. For young children entering school, they may find the fluorescent lighting, ticking of the clock, polyester in their clothing or smells from the cafeteria may prove overwhelming to the point of outbursts. Trying to identify the challenge and then accommodate will allow the ASD child to focus on classroom work rather than the irritant.
Others with sensory processing disorder may:
Bump into things
Be unable to tell where their limbs are in space
Be hard to engage in conversation or play
Adrienne Gaither, OTR, C-SIPT with the Autism Community Network in San Antonio Texas, addresses questions on Sensory Processing and how the disorder may apply to your child diagnosed with an Autism Spectrum Disorder.
Having a life means facing our fears and going out
There comes a time in every Aspie’s life, that having a life means facing our fears and going out into the world. I love to sing, do stand up comedy, go to restaurants and sometimes (although very rarely) I even want to go to a party. Does this mean I don’t have Aspergers? Of course not! People with Aspergers want to socialize, but years of getting it wrong may knock the desire to try right out of us. It is never going to be easy.
Performance, on the other hand, may be quite comfortable for many aspies, because people stimulate the amygdala in our brain causing a rush of adrenalin, perfect for belting songs on stage, or short bouts of witty banter. But authentic communication in a crowd—and by a crowd I mean more than one—very difficult. We get overloaded, awkward, bombarded, confused. Rocket science may be simple, but social conversation is an unfathomable mystery for many of us. Here are a few basics to help you in social situations:
Keep in good mental and physical shape, through healthy diet and exercise
Have interests and activities that raise your self-esteem. If you like and value yourself, others may follow suit.
Manners are the oil which make situations run smoothly. Please, thank you, hi, how are you, nice to meet you, goodbye, have a nice day, may all seem trite and meaningless but they are cues, transitions so that things can flow. Consider them signposts or turns in the road.
Always ask how the other person is, and it helps to throw in a “how is your family?” (or pet, or girlfriend, etc.)
Don’t go on and on about yourself or your interests unless asked, and not for more than a minute.
Children and teenagers with Asperger’s Syndrome often struggle with the social skills necessary for success in school and social settings. We interviewed psychologist and acclaimed expert on Asperger’s syndrome, Dr. Tony Attwood, for our documentary on Asperger’s.
Dr. Attwood offers proven tips and advice to help bolster the social skills as we approach back-to-school.
Steps that parents may take to help their kids with Asperger’s include the following:
One of the most challenging aspects of supporting college students diagnosed with Asperger’s Disorder is the need for follow-up with professors, college staff, and others. Follow-up is important to ensure deadlines are met and that assignments are turned in according to each syllabus. The fast pace of college, combined with the severe anxiety and executive dysfunction common to the spectrum, create the perfect conditions for students with ASD to forget deadlines or avoid high pressure academic or social situations on campus.
I’ve known dozens of students with ASD who promised: “I will work on my speech for Communications class this evening after dinner.” And they mean it sincerely when they say it. Stress and commitments mount as the day moves forward, however, and by dinner time students who made the promise may feel overwhelmed and overstimulated and avoid the assignment. Some may become focused so intensely on another subject or topic that they forget about working on their speech.
One year ago, Aspergers101 launched a Summer Series on Autism in conjunction with the San Antonio Public Library System. WOAI-TV live-steamed all four conferences and 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 it’s finest!
We want to share all four sessions with you.
The topics are as follows:
Diagnosis 2. Social Development 3. Choices in Education and 4. Independent 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
Do you suspect someone you love has autism or Asperger Syndrome? This program explores the signs, the medical explanation, and the hardwired facts. Topics discussed: signs of autism, the importance of diagnosis, grief, and moving forward with awareness. Hosted by Jennifer Allen, Founder of Aspergers101 and her son Samuel Allen. Special guest: Dr. Berenice de la Cruz, Ph.D., BCBA-D, Chief Operating Officer, Autism Community Network. MORE: the San Antonio Public Library and Aspergers101 announced a partnership and upcoming four-part educational series that will focus on understanding and excelling with high-functioning autism or Asperger Syndrome. A well-known team of autism experts (many of whom live successfully on the spectrum) will participate in discussions about important related topics. A question and answer session with the panel experts will follow each night. The series will be presented by Jennifer Allen, Founder and CEO of Aspergers101. Aspergers101 is a local nonprofit dedicated to empowering and educating individuals with high-functioning autism and Asperger Syndrome, their advocates, and the community.
#1 Diagnosis (May 9th 2017)
Download the pdf Powerpoint Presentation on “Diagnosis” here: Diagnosis
Occasionally, if not rarely, you come upon greatness. You are in the presence of a person, an idea or a creation that inspires you to the core and will make such a difference in your thinking that it changes the trajectory of your life’s path. This type of greatness occured for a roomful of people last week at an event Aspergers101 hosted in San Antonio Texas. Unlocking the Potential: An Evening with Dr. Temple Grandin proved successful by the powerhouse line-up of speakers. Over the course of the next several weeks, Aspergers101 will share much of the knowledge and encouragement delivered from the podium by these speakers but we wanted to offer a glimpse into the evening with this introductory blog.
An overview of the evening “take-aways” all followed the theme of the evening, Unlocking the Potential which was consistent with each speaker that approached the podium. Addressing the challenges that come with the Autism diagnosis is a must however, rethinking the potential and putting that potential into it’s unique purpose was the resounding message through the various perspectives of the speakers.
The evening was hosted by Jennifer Allen and son Samuel Allen offering personal stories, an update on the statewide “Driving with Autism” program and keeping the podium synchronized speaker to speaker.
Message From the Texas State Capitol
Kicking of the evening was Ron Lucey, the (powerhouse) Executive Director of the Texas Governor’s Committee on People with Disabilities. His message of support for all disabilities was only surpassed by his focus on our citizens diagnosed with Autism and improving conditions for employment in the state of Texas. This is a man of action. Ron Lucey works, no fights, on behalf of citizens with disabilities.
He made it clear that it’s the Mom’s who make
Ron Lucey/Executive Director Texas Governors Committee on People with Disabilities (l) Jennifer Allen/Founder Aspergers101 (r)
things happen and he and his committee are there to support them in their mission for equality. He did read a proclamation made recently by Texas Governor Greg Abbott, declaring April Austim Awareness Month in the State of Texas. This was presented to Jennifer Allen with Aspergers101 at the end of his talk.
Following Ron was a brief video from speaker & author Dr. Gail Saltz. Dr. Saltz recently wrote ‘The Power of Different’ and included much of that book in her presentation. From a medical statepoint, the brain is wired differently for those on the autism spectrum and the ‘gifts’ that are unique to that brain are the gifts humankind is lucky to have. It’s these specialized talents that we must utilize for the their future and ours. Here you can view the message from Dr. Saltz in it’s entirety.
Revolutionary Employment Program Introduced
The next speaker super charged the evening with the topic of employing those with Autism. Tina James is the Chief People Officer of one of the top-rated businesses in America today. H-E-B Grocery is a giant grocery chain in the state of Texas and is swifty becoming the template for all business structures as they clearly place people first. When Tina spoke of a new program H-E-B is premiering called, Bridges, she spoke from her heart. Tina has a son on the spectrum and her passion for equality in employment literally set the audience on the edge of their seats!
Tina James/Chief People Officer H-E-B
Bridges launched last summer with an internship offered strictly for those with an autism/asperger diagnosis, in the coveted I.T. Department. The rate of pay was not the standard national average of $8/hr but double that rate…autism or not! This is only the beginning of what proves to be a smarter way of employment: hiring people for their abilities while removing the obstacles then advancing them up the ladder into the company that continuously grows off the charts. The ovation with this proactive approach to employment was only paralleled by the next speaker.
The Keynote Address: Dr. Temple Grandin
The keynote address from Temple Grandin was supercharged.