By Patty Pacelli
Between about 18 months and 2 years, we noticed our second child, Trevor, wasn't talking as much as his older sister had at the same age. Everyone told us, "boys are slower," and not to worry. But the bigger concern to me was that he didn't seem to understand what we were saying to him. When we asked him if he wanted to do something we knew was fun for him, we didn't get the expected excited head-nod and feet-kicking, or even a "yeah!" He just continued on with no reaction.
Trevor's first year of life seemed fairly typical, and he met most of the normal milestones, such as smiling, cooing, gurgling, laughing and clapping his hands. He was right on schedule with crawling, sitting up and walking. The earliest signs of something not typical with our baby were his delays in language comprehension and speech that started at around 12 to 18 months.
At Trevor's 2-year medical exam, the doctor asked how many words he had in his vocabulary. I could only think of about 3 one-syllable simple words, plus a few words we didn't understand, like "Kood" and grunts that we jokingly referred to as "speaking German." I thought back to our older daughter's 2-year checkup. She was speaking in complete sentences with a seemingly unlimited vocabulary. The doctor said that at 2 years old, a child should be putting two words together to form an idea, usually a noun and a verb, and because Trevor wasn't doing this, and had such a small vocabulary, he had some delays in speech and language and could benefit from immediate therapy. He mentioned autism as a possibility, but knew that the therapy could help shed light on that, while helping with the issues we already knew about.
I started taking Trevor to weekly therapy sessions with a wonderful young woman who taught and modeled for my husband and me how to use play time and everyday situations to improve his language and overall communication skills. We were assigned a certain amount of interactive play with Trevor. This meant sitting down on the floor with him and directing his play with toys such as Lego figures that could interact with us and with each other. All of this involved using language. We also were told to increase his vocabulary and use of language by always adding a word to whatever words Trevor said. If he saw a fish at the aquarium and said "fish" we would say, "Yes, fish swimming" and try to get him to repeat that and understand what it meant.
During this time, he also started repeating what we said, rather than answering the question. We learned this is called echolalia and can be a sign of autism. This repetition continued until he was about 5 or 6, and grew to include lines from TV shows, videos and movies that he memorized. It became quite entertaining as he would use these phrases to answer questions from anyone, sometimes they were appropriate, sometimes not. This phenomenon is explored in the documentary film, Life Animated, about a boy on the spectrum who memorized Disney movies.
The therapy expanded over the next 3 years to include role-playing conversations, using diagrams and pictures to help communicate social skills and building his vocabulary and comprehension. When he had just started kindergarten, he was diagnosed with an autism spectrum disorder and was put on an Individualized Education Program (IEP) which allowed him to continue with speech and language therapy provided by the public school.
Trevor made great progress in his speech, language and comprehension thanks to the actions we took in his first few years of life. He is now 24 years old and has graduated from college and is a prolific book author and film reviewer. My advice is to keep getting professional advice and devote yourself as much as possible to helping your child with any delays. Don't listen to people who say that everything is OK or normal if you don't feel that it is.
By Trevor Pacelli
I may land on the autism spectrum, I may have delayed speech development, I may be at times discomforting to talk to in person, I may get tired easily from being out a lot, but I still have proven that I’m just as capable as everybody else in working a satisfying career.
One month after I received my Bachelor of Arts in Film and Media Studies from Arizona State University, my parents offered me a position in their company to prepare me for a career. They had me start with my three primary areas of interest: photography, movie reviews, and my book I wrote at 19, Six-Word Lessons on Growing Up Autistic. Since then, these areas have grown into a website where I sell photos (trevorpacelliphotography.com), a blog where I write about autism lessons in your favorite movies (trevorsviewonhollywood.com), and talks I’ve done for schools and other groups around the Seattle suburban area to promote autism awareness.
The bad news is, not everyone understands this. A 2013 study by the Journal for the American Academy of Child & Adolescent Psychiatry says that only 53.4% of adults with autism aged 21-25 have work for pay outside the home.
It’s much harder for people on the spectrum to find work that both pays them well and utilizes what they’re capable of, as those types of jobs are limiting. What makes it harder is that many corporations value team players who are excellent with interpersonal interaction; which does not align with the heavily introverted traits of autism.
The mental health website Emaxhealth.com has listed jobs best recommended for anyone on the spectrum, which includes but is not limited to computer programming, engineering, designing, photography, accounting, and journaling. Or, if the worker is nonverbal, job titles including janitor, store stocker, or landscaper work out great. They do not recommend “people” jobs such as waiter/waitress, market trader, and receptionist. While limitations exist for more popular jobs, it’s not hopeless.
In fact, accommodations are everywhere to help those with developmental disorders find the right type of employment. There are hiring programs, including those that help you after you get hired. Now, these can go a number of ways: If there is any sensitivity to bright lights, you can ask to have the fluorescent lights in your work space turned down. If you are caught off guard by sudden schedule changes, the employer can know to give more advance notice of these changes. Most people on the spectrum love a predictable work environment, and employers are always required by law to make sure each employee is comfortable in his or her work space.
Once one with autism finds an employer where both the boss and worker can mutually cooperate, then the positive skills of an autistic worker come into play. A couple of key strengths than an autistic worker can use to benefit a business includes a hawk’s eye attention to detail, a photographic memory, passionate focus on a given task, and a vivid imagination. The journey to finding the right type of job is different for everyone, and everyone gets to the position of earning regular income differently and in varying amounts of time, but everyone is capable of doing it, no matter what it may appear.
And finally, here is an article about the Soldiers of Intelligence Unit 9900, who demonstrate the skills of autism utilized in a job that actually requires them to save thousands of lives.
--By Paul Deniken, Guest Blogger from DadKnowsDIY.com.
It’s important to accept that a normal home might not be safe or comfortable for a child with special needs. Most of the time, modifications must be made that ensure the child has the opportunity to be mobile and self-sufficient. “Home Modification” may sound like a scary, expensive task - but in reality there are plenty of reasonable, economical, and even eco-friendly ways to fit your house for someone with special needs.
Sensory modifications - Some children with special needs such as autism spectrum disorders have more sensory issues than true mobility, but can also require some unique home modifications. Some great tips for this include the removal of fluorescent lighting (you can replace them with the far more eco-friendly LED lights) and the use of soundproof materials for floors and walls. Colors are also important.
“Notice the colors your child pays the most attention to, and use those colors when you really want your child to pay attention to something. For example, you could decorate your home with very neutral colors, but use plates in their favorite color to make eating more interesting. Use learning toys with bright colors. Or pick a more exciting color for a comforting blanket or special stuffed animal,” according to NavigateLifeTexas.org. “Think about using sound-reducing materials in places where you spend a lot of time.”
Ramps and flooring - Many special needs are of the physical variety, and stairs can be a challenge for children with movement disorders, injury, or visual impairment. Even if your special needs child isn’t in a wheelchair, ramps might be essential to their improved mobility. Portable ramps are a great product because of their versatility.
A cool alternative to the large, sometimes expensive metal ramps used with wheelchairs to navigate living spaces, are lightweight mobility aids like the ones made by Adaptive Design. The company also specializes in art, recreation, self-care, and other products for children with impairments - all made with eco-friendly products like recycled cardboard.
If you have the resources and your special needs child needs access to different levels of your home, you can look into installing a stair glide mechanism or even a small elevator.
When it comes to flooring, it’s important to think about the material. According to Michael Sledd of Expertise.com, “Cork flooring is often very stylish looking and easy to clean, and while it is firm and level, it is more forgiving to falls than many of the other flooring types mentioned above. However, due to its soft nature, it is typically not recommended for wheelchairs due to wear issues from the amount of pressure exerted by the wheels.
Vinyl and linoleum are the cheapest and somewhat accessible. For homes that need to accommodate wheelchairs, you may want to avoid deep grooved tile.
Modified knobs, handles, and railings - Replacing traditional doorknobs, cabinet, and drawer handles with easier-to-pull levers can help with accessibility around the home. Providing extra grips, handrails, and bars around stairs, bathrooms, and kitchens can also help those with a disability better navigate the home.
Trackers - Though it might be a controversial topic for some, many parents of children with special needs employ GPS trackers to make sure they always know what their child is up to and where they are. Here’s a good write-up on some of the best services available.
Accessibility Technology - Check out the Accessible Technology Coalition’s archives for a list of assistive technologies organized by age, type of disability, and more. There are so many products for the home that can make life easier for kids with disabilities and their caretakers.
For more ideas on how to make your home safe for all children, and to find great home projects, visit DadKnowsDIY.com.
Inspiration for Life with Autism
This blog has a variety of articles about people living life with autism, and topics and ideas that can help in the journey. Guest bloggers are welcome. Inspired by Trevor, a young adult film critic, photographer and college graduate on the autism spectrum.