In response, countless members of our community shared their perspectives on what they believe to be the hardest parts about autism. We wanted to share their stories with you, along with resources for our community. This is what they had to say…

A parent writes,

Did you know? Autism Speaks has compiled a page of tools and resources specifically for those looking for financial assistance. In addition, the new Special Needs Financial Planning Tool Kit can help you and your family create a financial plan for the future. We also have a resource guide for all 50 states to search for resources and services in your area. Our Autism Response Team is specially trained to connect people with autism, their families, and caregivers, to information, tools, and resources they need. They can be contacted anytime at familyservices@autismspeaks.org or by calling them at 888-288-4762 (en Espanol 888-772-9050).

A self-advocate writes,

“The hardest part of autism is people asking everyone but those of us with autism what autism is like. If you really want to know what the hardest part of autism is I’d suggest you look up some of the blogs written by autistic people, because if all you do is listen to the neuro-typical people around us you won’t be any closer to understanding us.”

Did you know? At Autism Speaks, we host a weekly blog series called “In Our Own Words: Living on the Spectrum” that highlights the stories of people on the autism spectrum from their own perspective. This series has given those on the spectrum the opportunity to share what life is like for them. Carly Fleischmann, a 21-year-old adult on the autism spectrum who is nonverbal but communicates via an iPad, is a great example of who we feature.

A parent writes,

“The hardest part of autism is when my daughter apologizes for her slow responses and other challenges she faces. It hurts to see her hurt for something she has no control over.”

Did you know? Our School Community Tool Kit is a great resource to help your children feel more supported and accepted. The purpose of this kit is to provide helpful information to everyone from teachers and peers to bus drivers and custodial staff about students with autism to help achieve positive interactions and increase learning for all members of the school community. In addition, one of many helpful blogs written by parents on our site is from autism mom Celina Miller, called 5 Strategies to Explain Autism to a Child Who’s Affected by Autism.

A parent writes,

“The hardest part is not knowing what the future holds! I have spent 18 years advocating, cultivating, encouraging, researching. We have made a lot of progress. Yet, I still wonder… Will he attend college, go to senior prom, get married or have children?”

Did you know? Autism Speaks has several tool kits that focus on the transition to adulthood for people with autism. These tool kits include our Transition Tool Kit, Postsecondary Educational Opportunities Guide, Employment Tool Kit, and our Financial Planning Tool Kit. In addition, theCommunity-based Skills Assessment can help parents and professionals assess the current skill levels and abilities of individuals with autism beginning at age 12 and continuing into adulthood in order to develop a comprehensive plan.

A self-advocate writes,

Did you know? Self-advocacy skills are so important to teach people with autism at an early age to help them as they transition to adulthood. The tool kits we mention above including thePostsecondary Educational Opportunities Guide and Employment Tool Kit would be great places to start. Speaking of employment, TheSpectrumCareers.com is a new job portal developed by Autism Speaks that helps people with autism find meaningful employment by matching them with employers and service providers.

A parent writes,

“The hardest part of autism for me has nothing to do with my son, it has to do with #autismawareness. I personally would not change one thing about my son (except for the sleeping in part, he RARELY does).”

Did you know? Autism Speaks is working hard to spread awareness about autism so that our community can feel more accepted and understood. As a side note, our ATN/AIR-P Sleep Tool Kits have strategies for parents to improve sleep in their children who have autism!

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