Autism Speaks Tool Kits designed to provide crucial resources

Remember Daylen V., 9, from World Autism Month 2019?

Last time we saw Daylen and his older brother, DaShaun, was back in 2019 when they were featured in our World Autism Month video series. At that point, Daylen, who was diagnosed with regressive autism when he was 3, was 7 years old and still struggling to find his voice. His mom, Deirdre, was constantly racking her brain trying to find ways to help her son cope with some of the challenges he was facing as a result of his autism. One of the first resource streams she landed on was our Autism Response Team (ART) and the 100-Day Tool Kit.

“When I contacted ART, they were very nice and so understanding. They told me about the 100 Day Tool Kit and that they would have it printed and bound at my local FedEx Kinkos store,” said Deirdre. “The Tool Kit helped me through my first 100 days after his diagnosis and beyond. It helped me understand Daylen and his challenges better. It also gave me a wealth of knowledge that I still use today. I’m constantly guiding parents to the Autism Response Team and the many downloadable toolkits on the website. The knowledge you can receive there is invaluable.”

Armed with a solid foundation about what to expect moving forward regarding her son’s diagnosis, Deirdre helped guide him through daily virtual therapy sessions and routinely drove him back and forth to in-person sessions several times per week, all in the hope that he would make steady improvements on his way to

reaching his full potential. More than two and a half years later, Daylen has grown leaps and bounds, both in stature and through the progress he’s made in therapy and intervention services.

“Daylen has grown so much since February 2019,” said Deirdre. “He is still considered non-verbal, but he is starting to better respond to questions like, ‘What do you want? Where do you live?’ And some yes and no questions. He has shown me that even though he has a hard time verbally answering questions, he is good at writing his answers in complete sentences. He also writes his answers to math problems instead of verbally answering, and is also learning to type so he will be able to communicate via text.”

Although getting through the pandemic has been difficult on his family, the extra time at home has allowed Daylen to relax a bit, which has led to improvements in many areas—and even a monumental breakthrough.

“The shutdown allowed me to see just how busy we were with all the therapy sessions he would attend each week. After a few months without all the constant therapies, I saw some of the behaviors like tearing books, meltdowns and tantrums disappear. I wanted to give him a break because he’s barely missed any therapy since being diagnosed at age 3. Taking a step back from all the therapies allowed us some free time to go to the beach and simply relax. We went to the beach twice this year and he loved it. He actually started talking while he was in the water!”

As Daylen continues to mature and become more independent, there’s no doubt that his mom will do everything in her power to make sure her son can life a full, meaningful life. She said she will continue to utilize the bountiful resources that Autism Speaks offers to the community—especially the Transition Tool Kit and Financial Planning Tool Kit as well as the Guide to Puberty and Adolescence—to ensure Daylen is well equipped to handle anything life throws his way.

Meet Nathan R., 52

When Nathan was diagnosed with autism around the age of 50, it provided him with an explanation for many of the challenges he faced growing up and still faces today. Through the years, he recalls countless times when his shy, passive demeanor left him feeling like he wasn’t good enough or simply didn’t fit in. Other times he would wonder why he paid so much attention to detail and became laser focused on topics that interested him.

But today, at 52, Nathan feels like he finally has a better understanding of himself thanks to his diagnosis—and hopes to get back to into the workforce. As COVID-19 disrupted most of the world, he, like many others at the time, struggled to find work, so he reached out to the Autism Response Team (ART) for employment resources.

ART is an information line for the autism community. Our team members are specially trained to provide personalized information and resources to people with autism and their families. They can answer your questions, connect you with Tool Kits and other valuable information, and help you find autism services and supports in your community.

“I was working on a temp assignment as a lab assistant at a medical testing site, and I heard an ad for Autism Speaks on the radio,” said Nathan. “I knew this assignment would come to an end soon, so I decided to look up resources about job hunting and other helpful advice about finding employment. I was able to download everything into my job search folder, including the Employment Tool Kit. I value employment because it really helps with my condition. It’s just been an extremely great hurdle with limited opportunities.”

Nathan said he enjoyed his time working as a lab assistant but felt his autism prevented him from being utilized fully, although he wishes he could have contributed more. He credits his supervisor and employees for always treating him with respect and appreciates his time spent working there.

If you’re looking for employment resources, financial planning advice, assistance with housing or resources on many prevalent topics in the autism community, you can find all of our downloadable Tool Kits here.