Autism Resources From Autism Speaks

There’s a lot to know about autism spectrum disorder. Autism Speaks has many resources to help parents learn more and find support, no matter where they are on their journey.

About 1 in 54 children in the U.S. is diagnosed with autism (ASD), according to 2020 information from the CDC, with boys four times more likely to be diagnosed with autism than girls. For families that have a child with autism, Autism Speaks can provide a wealth of support and information.

Autism refers to a broad range of conditions that can appear as challenges with social skills, repetitive behaviors, speech and nonverbal communication. The autism spectrum is incredibly vast and diverse. Individuals each have a unique set of strengths, challenges, perspectives and experiences. Some people with autism need little or no support and can go on to live independently, while others with more significant challenges may require more consistent, sustained support.

Autism Speaks serves the entire autism community by guiding families and individuals to resources that can help them overcome obstacles that they may encounter and reach their full potential. This includes those who need significant support all the way to those who can live independently — and all age groups — from baby to full grown adult. 

“We believe in a world where all people with autism can reach their full potential, and early diagnosis is critical to making this a reality.” says Colleen Shinn, director of community outreach for Midwest and South Central regions at Autism Speaks.

Children do develop at different rates, yet early treatment improves outcomes — often dramatically, Shinn says. “Studies show, for example, that early intensive behavior intervention improves learning, communication and social skills in young children with ASD,” she says, adding that parents who have concerns should not hesitate to contact their healthcare provider and have their child screened.

Early diagnosis is so important

Identifying the earlysigns of autism as a parent can make a lifetime of difference in helping a child access the best resources to thrive throughout life. An early diagnosis can help a family secure early assistance with improving learning as well as communication and social skills for their young children with autism.

The American Academy of Pediatrics recommends that all children be screened for autism at their 18 and 24-month well-child checkup.

“If you’re not sure if your child has been screened, you can ask for a screening,” she says. Or go to the Autism Speaks website and access the Modified Checklist for Autism in Toddlers Revised (M-CHAT-R). The screening questions explore your child’s verbal and non-verbal communication, among other behaviors.

“If the screener shows that your child may have a greater chance of having autism, it is not a diagnosis,” Shinn says. “You should speak with your child’s healthcare provider about getting a full evaluation from a qualified medical specialist such as a neurologist, behavior pediatrician or psychiatrist, who can provide a diagnosis.”

“A diagnosis of autism is an important turning point in a long journey to understand your child’s world,” Shinn says.

Many supportive resources

Parents concerned about their child’s development, but who haven’t received a diagnosis of autism, can still receive services free of charge through the State of Illinois’ Early Intervention program for kids from birth to age 3, or, for kids from 3 to 21, at your local school district’s special education office, Shinn says.

If your child receives a diagnosis of ASD, there are many resources for families through Autism Speaks, including the Autism Speaks First Concern to Action Tool Kit and First Concern to Action Roadmap. Both tools provide helpful information about child development and autism, making them a great place for families to start.

“It’s important to remember that if your child does receive a diagnosis of autism, he or she is the same child as before the diagnosis,” Shinn says. “The diagnosis provides access to the services he or she needs.”

Because this is a confusing and potentially overwhelming time, Shinn suggests that parents and caregivers reach out to the Autism Response Team at Autism Speaks by emailing help@autismspeaks.org or calling 888-288-4762.

The Autism Response Team can provide support, encouragement and assistance. Team members are specially trained to provide personalized information and resources to people with autism and their families. They can answer questions, share tools and resources, and guide individuals and families to supports within the community

Response team members are available weekdays between 9 a.m. and 5 p.m. in all time zones, and there is a live chat function on the Autism Speaks website that is available between 9 a.m. and 7 p.m., Eastern Time. There’s also a dedicated Spanish language number: 888-772-9050.

“Even if you have no connection to autism, but have a question, please feel free to reach out,” Shinn says. “We assist people of all ages, including children, teens and adults with autism.”

Other things to know

It’s a common saying in the autism community that if you’ve met one person with autism, you have met one person with autism. What this means is that each individual with the spectrum disorder is an individual with different strengths and challenges.

“It’s so very true, and it’s imperative to know that the spectrum is broad,” Shinn says. “It’s important that we’re a community who is here to support, accept and understand one another, regardless of where a person might fall on the autism spectrum, or how different their experiences can be. We’re all in this together and we need to be united to face any challenges that might occur and to, most importantly, celebrate any successes and accomplishments.”

It’s important for parents to educate themselves because they are their child’s best and most important advocate, Shinn says. The many resources available through Autism Speaks can help. Through the resource guide, directory, podcasts, blogs and toolkits, parents can learn to advocate for their kids in many aspects of their lives.

“It’s so important to surround yourself with a team of people who will help you navigate through your situation. Autism Speaks is always here to help and can provide you with resources and information throughout your child’s life and your family’s journey,” she says.

Learn more about the many supportive resources available at Autism Speaks. Visit autismspeaks.org.

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