What is Autism Spectrum Disorder (ASD)?
Autism Spectrum Disorder or ASD is a constellation of traits characterized by challenges in social interaction, communication, and repetitive behaviors.
What are symptoms of ASD?
Examples of challenges in social interaction include:
- May be passionate about certain topics and speaking continuously about it
- May have deep emotions and thus having difficulties with emotional regulation
- May miss social cues
- May not make eye contact
- May not respond to name
Examples of communication challenges include:
- May speak later than peers
- May be non-verbal
- May have echolalia
- May be honest and direct
- May be a deep thinker
Examples of Repetitive Behaviors include:
- May line up objects
- May enjoy rocking back and forth, spin, flap hands when excited. Let them do this.
- May experience senses of sight, smell, touch, hearing and tasting differently.
- May have difficult time transitioning from one activity to another
- May need organizational support
- May need help remembering things
- May have low muscle tone in both large and small muscles
- May eat same foods over and over
- May not like feeling of clothing tags
- May shut ears with hands when exposed to loud sounds
When did we first notice Ian was neurodivergent and what were his symptoms?
Prior to his first birthday, I noticed telltale signs that Ian was neurodivergent. Although Ian was a cheerful baby, he avoided looking me in the eyes, hesitated to follow instructions and struggled to understand what I was saying. As months passed, Ian seemed like he needed a screen, or risk losing focus, oftentimes becoming overstimulated by his senses. Once he reached 18 months of age, I noticed he struggled with gestures, such as saying hello and goodbye, and failed to respond to his name when called. When I raised these issues to family and friends, they would advise me not to worry, that he’s still developing and that boy’s are late to communicate.
In Ian’s nursery school, he had almost no friends, was obsessed with the alphabet, and would create letters out of play-doh, manipulating them for hours. His teacher at the time believed that Ian was disobeying instructions purposefully and would berate him often.
Ian is hyperlexic and taught himself to read at the age of 2 ½. Ian’s special interests are the alphabet and numbers. Currently, as an 8 year old, Ian will sing the alphabet or recite numbers continuously, spin in place, jump around to regain focus. He also loves learning about how the world works and has a voracious appetite for all things scientific. Ian needs some organizational support remembering to take home and bring back his homework, coat, and water bottle regularly. Ian was diagnosed with sensory processing disorder at 2 ½, which means that he has a difficult time experiencing the senses of sight, smell, touch, taste and hearing and has further challenges with his vestibular movements (balance) and proprioception (sense of self according to space). He does not like the feeling of clothing tags; he shuts his ears with his hands when encountering loud noises; he has low muscle tone and had OT/PT/ST for 2 ½ years. Ian has big feelings and needs time to regulate his emotions. He becomes scared or upset easily, especially when he feels things aren’t fair, if someone is being mean, or if he has to transition from one task to another. When Ian is engaging in activity, he is oftentimes inflexible. We use timers and verbal cues to help him transition.
When did we get him evaluated?
Nearing Ian’s 2nd birthday, we scheduled Ian for his 2 year appointment with this Pediatrician. The Pediatrician performed his routine screening and questioned whether Ian spoke in 2-word sentences. I replied that not only did Ian struggle to speak in 2-word sentences, but that he experienced challenges with verbal communication as a whole.
After finally calling Nassau County’s EIP in August 2017, Ivan and I met with an Initial Service Coordinator (ISC) who reviewed our rights and provided us with a list of evaluators. During Ian’s evaluation at our home, he underwent several exams to test his gross motor skills, fine motor skills, speech and language development and overall behavior. The developmental therapist performed a play-based evaluation, observing and communicating with Ian during the session. As the evaluation progressed, Ian was so overstimulated, that his actions were reduced to giggles and a constant need to become lost in our hugs. Ultimately, Ian scored in the bottom 2nd percentile for speech and language development, with 98% of those in his peer group performing better than Ian did in the speech and language section of his exam.
What was Ian initially diagnosed with?
Through the evaluation, Ian was diagnosed with Language Processing Disorder and Sensory Processing Disorder, results that Ivan and I were surprised with since we fully expected Ian to be diagnosed with ASD based on our experience during Ian’s evaluation. With Language Processing Disorder, Ian has difficulty comprehending language and has trouble understanding the words spoken from our mouths. Sensory Processing Disorder means that Ian experiences his senses differently from the way neurotypical individuals experience taste, touch, sight, hearing, smell, vestibular movement (e.g. sense of balance) and proprioception(e.g. sense of body position relative to space).
When was Ian diagnosed with ASD?
My husband Ivan and I felt that Ian may have undiagnosed Autism Spectrum Disorder (ASD) and/or Attention Deficit Hyperactivity Disorder(ADHD), although Ian no longer qualified for services and had been evaluated for autism twice when he was 3 years old. We asked our school psychologist for an evaluation, which indicated Ian may have ASD. We tried to contact a developmental pediatrician and when we saw the wait was one year away for an initial appointment, we contacted our good friend for help. She relayed that we could get the same evaluation completed by a pediatric neurologist. Post-evaluation, the neurologist diagnosed Ian, who was 7 years old, with ASD, almost 5 years after Ian had his first evaluation performed with Early Intervention at the age of 2 ½ years.
Did I experience any denial?
Paradoxically, six months passed before I gained the courage to contact the Early Intervention Program (EIP) when Ian was 2 ½. Although I always felt something was amiss, I was at times in denial that Ian had developmental delays. What if I was exaggerating his symptoms? What if what I told the pediatrician was all in my head and he provided the wrong diagnosis?
What therapies did Ian receive and what were the results?
Immediately after receiving Ian’s results, our wonderful ISC set up a meeting to create our Individualized Family Service Plan (IFSP), a written outline of the EI services Ian will need. Together, we scheduled Speech Therapy 3x/week, Occupational Therapy 2x/week and Physical Therapy 2x/week, the latter two of which were administered at a nearby sensory gym. After 2–3 months of therapy coupled with the transition to his new class, Ian was not only smiling, but he was thriving. In March 2020, one month after his 5th birthday, Ian was reevaluated and was found to be in the 97th percentile for speech and language expression. In other words, as a 5 year old, Ian could express language as if he were 7-years old. Needless to say, Ian was quickly transitioned out of CPSE in June of 2020 as a result of his spectacular developmental advances, a decision we couldn’t be more than thrilled to experience.
What support does Ian have now?
The neurologist who finally diagnosed Ian with ASD in May 2022 was quick to mention that since Ian’s ASD is of the high-functioning variety, akin to what used to be labeled Asperger’s syndrome until the DSM-5’s revision in 2013, Ian is not eligible for ABA therapy, “a type of therapy that improves social, communication and learning skills through reinforcement strategies”. Fortunately, we were able to take Ian’s newfound diagnosis and have our school psychologist create a 504 plan, “a blueprint for how the school will support a student with a disability and remove barriers to learning”. In his 504 plan, his teachers provide him with preferential seating, movement breaks, drawing breaks, and a daily behavioral chart.
What are some classroom accommodations for Ian?
Movement and Drawing Breaks
- Have breaks every 20 minutes to move body
- Provide drawing breaks only after all classwork work is complete and of good quality.
Using Timers and Verbal Cues
- To help Ian transition from one task to another, use timers and verbal cues (e.g. “In 1 minute, you must stop drawing and begin classwork”).
- To help Ian remember to submit homework, ask Ian specifically every morning to submit homework.
- To help Ian remember to bring his homework, water bottle, coat, chromebook home, ask Ian if he packed those items at the end of each school day.
- To control his emotions further, he learned to clench his fists, breath deeply, jump up and down, and exhale. Please help him use that coping mechanism when encountering big emotions.
- The teachers and I have a fantastic daily behavioral chart that shows me how he did that day.
Have Empathy and Patience
- When Ian has big emotions and becomes upset easily, instead of yelling back, we try to listen to what he has to say in a kind and nurturing way. Oftentimes, he becomes upset if he feels unheard or spoken to in an unkind way.
How does Ian’s ASD manifest itself when he is stressed?
We fully encourage engaging in stimming, or self-soothing behaviors such as rocking back and forth, jumping, humming, flapping hands, etc. However, when Ian is stressed, Ian’s stims can be disruptive to others. For example, 2nd grade has been a challenging year for Ian and, as a result, Ian has begun verbally stimming during class time, loudly singing the alphabet as the teacher instructs the class and spinning in circles around the classroom. Ian was also having constant tummy aches induced by stress. We took him to 5 different doctors and specialists before being told his tummy aches are a result of stress from school. Ian is currently seeing a LCSW weekly to speak about his anxieties.
Besides 2nd grade, other stressors include the following:
- Ian being rarely invited to birthday parties or being specifically uninvited from parties.
- Ian being called weird for being autistic and stimming in school.
How has Ian been misunderstood due to his Autism?
Ian has had teachers, coaches and friends treat him as if he is weird or purposefully defying them. For example, one day, as I viewed his nursery school classroom through a two-way mirror with another assistant at the school, I witnessed Ian speaking in class, then subsequently getting yelled at, pulled to a corner and placed in time out. Ian, who loves books, found one with a piece of wrapping paper still attached to it. I watched him gently remove the wrapping paper and begin reading the book. I waited until the end of the day during pick-up time to ask the offending teacher how Ian fared in class. The teacher lamented that Ian stormed off to a corner and began ripping up books in anger. After listening to her account, I felt so grateful to have been present that morning to witness the truth and confidently refute her false accusation. I promptly responded that I was there, that I saw everything and that her narrative was egregiously inaccurate. Fortunately the Principal of the school, a staunch and compassionate ally, and someone I will be forever grateful to, immediately switched Ian to a classroom with a teacher who was more honest, compassionate, and who knew how to interact with a child with special needs. I can say with utmost conviction that this new teacher played an integral role in saving our son’s life.
What is important to know about Autism and those who live with ASD?
We have to be our children’s biggest champions and instill in them the confidence that not only do they belong in this society, but they are integral to its evolution. Our world needs different types of minds and we feel blessed to have the privilege of raising our son Ian in all his neurodivergent brilliance. Please remember – your child is not broken and that it is a privilege to have them in our lives. Please treat your child with dignity and respect.
If you believe your child may have Autism, please have them evaluated immediately – it will only help your child navigate this world in a more positive way. As a parent, you will hear far too many “no”’s from your friends, strangers, and even some in the medical community. Follow your gut and intuition – you know your child best and don’t stop advocating for your child and your right to not just receive an evaluation, but also receive critical developmental services. If you are having difficulty speaking with your school or physician, please let Khan’s Tutorial know. We will do our best to help you.
Where can I go to get evaluated in NYC?
Children Under 3 – Contact NYS Early Intervention Program at (518) 473-7016 or contact county Early Intervention Program at https://www.health.ny.gov/community/infants_children/early_intervention/county_eip.htm
Child Between 3-5 – Write referral letter to the Committee on Preschool Special Education (CPSE). In the letter, list your child’s name, DOB, concerns, phone number, address and that you are requesting an evaluation. NYS CPSE contact information can be found here: https://www.schools.nyc.gov/learning/special-education/help/committees-on-special-education
School-Aged Child – Write a referral letter and give it to your school’s Principal. In the letter, list your child’s name, DOB, concerns, your phone number, address and that you are requesting an evaluation.