This new page is a place for your story to be heard. By sharing your story with others, you can offer insight and support to parents with concerns of Autism Spectrum Disorder and parents of the newly diagnosed.
Use the contact button (above) to submit your stories, in the following format:
-Your name (can be a pseudonym or left anonymous)
-Your child’s name (can be a pseudonym or left anonymous)
-Where you’re from (optional- this is used to meet new, local people who are in the same boat)
-When your first concerns were and what they were
-What services or causes for “progress”, in terms of coping, they’ve since received/experienced, if any.
Other Parents’ Stories:
Angela and her child, C, are from Singapore. Angela has written a few entries on C’s progress and their journey thus far. They can be found on the following blog entries:
When Tomorrow Comes: https://autismbeautycombines.wordpress.com/2015/06/08/hello-world/
Our Assessment and Intervention Journey: https://autismbeautycombines.wordpress.com/about/our-assessment-intervention-journey/
Angela wishes to help as many parents as she can! “Love is what makes you smile even when you’re tired”
NickyB has a child on the autism spectrum and his name is MJ. NickyB runs the blog http://www.nickysdaywithautism.com. Her first 3 posts on her blog detail how their “Autism Journey” began.
Read NickyB and MJ’s story via these three links:
Amber, from Washington state, has a son named Tyler on the autism spectrum. Here’s their story:
Tyler is 7 years old. He is a happy, sweet, intelligent boy; my first born. He loves video games and music. He loves when I sing “his” song (You are my sunshine). He is a great big brother. He helps his brother learn new things, plays with him; waits for him if he falls behind. Tyler is compassionate and worries when we are sick. He checks on us if we get hurt to make sure we are ok. Tyler loves to come and snuggle when he wakes up, and he loves animals. Tyler is also Autistic.
When Tyler was a baby, he was perfect. He was happy and silly. Very rarely did he cry. He was such a sweet heart. He hit his major milestones early- rolling over at 2 months, crawling at 5 months, walking at 11 months. He loved to learn and play with toys, but there were clues– clues that I noticed, but wasn’t concerned about at the time. Tyler didn’t point to things, he would babble and had a limited vocabulary, and he was obsessed with drumming. He would tap on anything and everything and wasn’t interested in playing with other kids. He liked to share, but other babies his age weren’t of any interest to him. At the time, I chalked it up to a few little delays that he would quickly catch up on. Everyone around me said these things were normal. After age 1, up until about age 3, which is when I began the process of evaluations, he began and continued to do some odd and disturbing things.
– Limited speech- by age 3, he was only stringing 1-3 word sentences and could not converse in small back and forth communication. He would start a sentence with a real word, have a few made up words in the middle, and then end with a real word. It was clear he was eager to talk to you, but just didn’t know how.
– Severe meltdowns- Tyler would bang his head on anything when he was upset. From before age 1, he would hit his head repeatedly on floors, walls, furniture, and even a concrete porch once. Against my judgment, my family all felt this was normal, as my sister did this when she was a child. The difference was that my sister would actually test how hard she could hit her head before it hurt her, in an effort to use it as a means to get attention, which Tyler did not. Tyler did finally stop doing this around age 5 or so, after he began receiving services to help him.
– Limited eye contact- Tyler’s eye contact has always been fleeting. He works on this skill daily, but still struggles. It’s as if eye contact is very distracting for him.
– Toe walking- always, since he first learned to walk he would tip toe. This, I thought wasn’t anything for a while, as my sister still tip toes and she is almost 30.
– He failed to point- Tyler never pointed at objects. He would just get it or whine and look in the direction he wanted me to look.
– Weird habits- when Tyler would watch a movie, or video on cassette (we had a lot of vhs and those were all his as they didn’t break like DVD’s and taught him some independence) he would watch the movie without sound in fast forward, or rewind. He would not watch anything normally.
– He was and still is obsessed with drumming. We bought him a kid drum set when he was 2. He broke it within two weeks from near continuous use. He uses books and Lincoln logs, sticks, his hands, utensils, etc. anything you can make noise with. He will go up to different objects, like metal fences, and lean his head on them while he taps the bars to hear the different tones.
– Sensitive to noise- vacuums, the tub faucet running, doorbells, car horns, etc. he would hold is hands to his ears and scream and/or run away. He tolerates the vacuum now, but still won’t be in the bathroom when I start the shower, until the actual shower is going.
– He can’t stay still- He doesn’t stay still, especially while he is trying to talk. He paces in circles, twirls, etc. while trying to talk.
– Refused to let me read to him- I tried since he was about 1 years old to hold a book and read to him. He would have massive screaming fits when I would try to read to him. It wasn’t until he was about 4 that my boyfriend tried to read to him, and Tyler finally didn’t have a tantrum over it. It took another year or so for Tyler to finally allow me to read to him.
– Transitions- Tyler had a difficult time transitioning and with change. If something happened that he wasn’t expecting, such as not giving him a warning before bedtime, or shower, he would melt down and have a massive tantrum.
– Groups- Tyler was very uncomfortable in large groups- more than 5 or 6 people. If he walked into a room and there were multiple people, he would automatically turn around and leave.
It was a struggle with determining if Tyler needed evaluations. I thought there was something wrong with him, but everyone around me told me he was fine. My family, my husband, doctors. They all said he was fine. It was normal, the tantrums, the delay in speech, the head hitting, and the weird quirks? All normal? I spent a lot of time depressed and feeling like a bad parent because I was the only one who thought something was wrong. I remember thinking often, “Why do I think there is something wrong with him? Why am I seeing all of these issues that no one else is? Am I just making these issues up in my head?”
It was within weeks of my divorce that I finally decided to trust my own instincts and get Tyler evaluated. At the time, Tyler was 4 and a few months. Though autism did cross my mind, I didn’t know enough to push for an evaluation, and had no clue where to start. So I contacted the school district and arranged an evaluation to see if Tyler met the requirements for free preschool.
The evaluation occurred in November 2012. Tyler and I went to the school, where they informed me that Tyler must meet 2 out of 3 of the delays- social/emotional, developmental, and speech delay in order to qualify for an IEP (Individualized Education Plan). After testing, they told me he met all three requirements, with social/emotional and speech delays being moderate to severe, and developmental delays as mild. The following January, Tyler was enrolled in early childhood learning (preschool). There wasn’t much progress at first. I received daily notes from the teacher on how Tyler’s day was. He would have massive meltdowns and throw objects, push chairs and desks, and scream in class. He hated group work and would only participate if he were doing something alone. Eventually, toward the end of the school year, he made some progress with speech, moving from 1-3 word sentences to 3-5 word sentences. He still would not have a back and forth conversation with anyone. He did however begin to answer basic questions. The next year, kindergarten, he switched schools and was placed in a special education class full time due to his severe meltdowns. During this year he progressed with conversing, and was able to have a conversation with 1 to 2 back and forth, if it was a subject he was interested in. If it weren’t something he was interested in, he wouldn’t respond.
January 2013, I brought Tyler to a new pediatrician and expressed my concerns about Tyler potentially having autism. She monitored him and said she personally felt he might have an anxiety disorder. But due to my persistence and concerns, as well as her being open minded, she wrote me a referral to the Seattle Autism Center for an evaluation. I received a letter from them a few weeks later stating there was a 6-month waitlist, and not to be concerned if I didn’t hear from them until then. Come October, 10 months later, I still heard nothing, so I contacted them. They found, for unknown reasons, Tyler’s referral claim had been closed which was why I hadn’t heard back. So they were able to schedule an appointment for June of 2014 for the initial evaluation.
Come June 2014, Tyler’s initial evaluation came. It was primarily the psychologist monitoring Tyler while asking me a million questions, and me filling out a questionnaire. Tyler was behaving well that day (of course) and I was concerned she wouldn’t see what I saw daily. I brought in all of Tyler’s IEP reports of progress for the psychologist to review. The next appointment was a few weeks later with a speech pathologist. She spoke with Tyler and played with him, made many transitions without prompts and other things. Tyler again behaved fairly well through the 1.5-hour appointment. The speech language pathologist told me that she would review her notes and submit them to the pediatrician who would do the final evaluation and ultimately determine if he would receive a diagnosis. She said Tyler’s case was difficult and she couldn’t tell me if she felt he was autistic or not, since she doesn’t do the diagnosis. However her recommendations were viewed highly with the pediatrician when determining diagnosis. The appointment with the pediatrician was not until January 2015. During this appointment, it was also about 2 hours long, with the doctor talking with Tyler attempting to converse with him, transitions, and basic tests for spatial, fine motor skills etc. (the evaluations were such a blur of stress that I’ve honestly forgotten a lot about them). 2 weeks later we came back to find out what the determination was. The pediatrician said that although by this time, Tyler had progressed significantly in speech and other major issues such as melt downs, self-harming etc., there were many clear indications, as well as previous reports (from his IEP) regarding his development and she was confident in diagnosing Tyler with Autism Spectrum Disorder. Unfortunately, autism has become more vague than before, so they don’t utilize terms like Asperger’s and such. But she did say that if they were using those terms now, he would fall somewhere around Asperger’s, or High functioning autism. Tyler spent Preschool through 1st grade in a special education classroom with limited general education classroom experience. He is academically at grade level. During the years between my significant other, the teachers/staff, and myself things have been implemented to help Tyler succeed. As of second grade, Tyler is in a General Education class with a Para Educator in the room at all times with him. Some of the things that help Tyler in his school and home life are as follows:
Prompts before transitioning – 5 minutes until/ 1 minute until, etc.
Compromising- When Tyler gets overwhelmed with class work, we compromise. Currently, the teacher has created an optional work folder for each subject so Tyler can choose a different but like work to complete in class if he is overwhelmed with the current work. Other compromises include completing half, taking his sensory break, and then finishing the second half.
Tyler gets two sensory breaks at school, where he is brought to another quieter room to talk or just have some Tyler time.
Incentives- Tyler has a 1-4 scorecard at school for each subject. He earns 10 minutes of computer time at school twice a day if he meets 3-4 stars. We use this chart at home to determine if he gets games/videos.
Tyler is very literal and factual. If we give him a time limit, he must know the actual time now, and the time in which the transition will occur, not just “in five minutes”.
**Tyler is currently being reevaluated, as his IEP is up this year. The school is checking on his sensory, speech, social/emotional, behavioral, and general academic level to determine new goals for the next three years, as well as change his IEP from developmental delays to Autism.
It’s been a long road for us. But just because my son is autistic, doesn’t make him any less amazing. He is loving and sweet and has a sense of humor. He has passions, is learning, and making progress every day.
Brittany and her son, Sawyer, are from Fort Campbell, KY. Here’s their story:
My first concerns were that my son was late to reach all the important milestones, and that he never looked or came when we called his name. He played alone most of the time, and seemed to fixate on random objects, such as shoes. He also liked to lick metal objects, and flapped his hands when he would get excited. We took him to Vanderbilt Kennedy Center in November of 2014, where he was evaluated and diagnosed as “classic severe non-verbal autism”. We got involved with our local early intervention programs, as well as got our son into a study for autistic toddlers in which he undergoes 6 hours of ABA therapy daily. He still doesn’t say much, but he’s come such a long way! I’m a big advocate for ABA, and I’ve made it my goal to educate as many people as possible of the signs of autism in toddlers. Most of the “red flags” were things I would never have thought of as off or odd, but when they’re all put together, it’s pretty alarming to see that the signs were right in front of my face. Early diagnosis and intervention is key to helping a child as much as possible, in my opinion.
Her blog is titled “We Heart Puffy Cheetos” (www.weheartpuffycheetos.com)
Michael and Tricia are from Houston, TX. They parent two boys– Carson (9 years old) and Wesley (6 years old). Carson, their oldest son, has an autism diagnosis. Read their story:
Carson was different from infancy. He just seemed difficult and stubborn. It seemed with a little discipline and strict parenting, we could teach him to be less stubborn and nicer to other kids. Carson hit all the milestones very early. He was walking, talking, reading, and doing math, much earlier than most kids, and doing it well. His vocabulary was way ahead of his age. As a toddler, his behaviors that made him seem difficult were the following. He always had to be moving. There was no rest. Sleeping was a challenge. We often had to hold Carson as tight as we could to calm him. We had to take turns because he would cry so loud and so long we couldn’t handle it for long. He had to be swaddled as tightly as possible. If he broke free from the swaddle, he would scream and need to be wrapped up tightly again. Carson could not walk past a button or switch without touching it. He broke almost everything he came in contact with trying to figure it out. It was an obsession he could not overcome. Loud situations, like birthday parties, restaurants, or family gatherings, would send him into a meltdown. We would have to take him into a quiet place by himself and hold him tightly to calm him. None of these things made us think autism at all.
By kindergarten, Carson’s behavior was declining. He was violent and exploded much to often for reasons we couldn’t figure out. At this point we decided to have an evaluation with a psychologist. We knew something was not right. Carson was diagnosed ADHD and OCD, which we were really not sure about. He was placed on medication, which did not help. We played with medications for awhile. First grade was worse. Carson had a few great months where his medication was perfect and he had a great teacher who understood him well. Second grade got even worse. He became more violent and was unable to control his emotions. We looked for more answers by changing psychologists and starting counseling. At this point Carson was not in the classroom as he could not handle it. He chose to be in a conference room in the office all day at school to do his work. He basically taught himself the work by looking at the examples and watching tutorial videos. Third grade was the same. Carson began having very severe sensory issues. There were days he could not put clothes on. The feel of any clothing was so terrible, he sat in the house naked under a blanket all day, for days. We started considering other possibilities. Carson was very social, which confused us when looking at the Autism traits. He didn’t choose to be alone, he wanted to play with other kids. By the encouragement of a friend, we looked at High Functioning Autism, or Aspergers. We each took several online quizzes and had family members do the same. They all scored Carson off the charts 100% Aspergers. At that point we had his new psychologist and the school system evaluate him. He again scored off the charts 100% Aspergers. This was halfway through 3rd grade, at 9 years old.
It was a very hard few years. It has been 10 months since the correct diagnosis. Carson has changed schools and entered an Autism program within the public school system. His medication has been changed. He goes to occupational therapy once per week. He has social skills classes. He has sensory items he uses at school and at home. Carson sleeps with a weighted blanket. He is doing fantastic. Carson spends 95% of his time in the mainstream classroom with the other kids. He rarely has a meltdown at school. His grades are fantastic. After almost 2 years of not learning anything at school, he is back on track. After almost 9 years of confusion and pain, we are very optimistic about the future.
Stay up to date with Carson’s story on Michael and Tricia’s blog: https://runstreak4asd.wordpress.com