Often I get asked about what helped me the most growing up on the autism spectrum. Being nonverbal until I was 2 and a half and dealing with obstacles such as sensory and motor challenges, I can truly say it was a long road to get to where I am today. Today I’m a professional speaker, have written two books and have my own nonprofit organization to mentor people with disabilities and consult with those children’s parents.
In the hopes of helping families who have a child with autism, here are 10 tips based on what helped me, along with what I’ve learned as an autism advocate.
1.Consider having a dialogue about your child’s diagnosis with them sooner rather than later. Growing up I dealt with challenges because people told me I was special, but I didn’t know what made me special. It was always a question I had in the back of my head, until I was 11 and a half and found out for the first time. Many parents have told me their kids have come to them about whether they have autism because of information they found on the internet, or recognizing aspects of themselves in other people with autism. Having these conversations avoids confusion down the line and can help them become self-advocates for their own rights in the future.
2. Start social groups for your children to stay engaged with the world. In my work as a consultant to parents who have kids with autism, one of the biggest fears they have is that their child will stay indoors and/or watch television all day with no engagement in public places. I know several parent groups throughout New Jersey where I’m from who host special events (and often autism/sensory friendly events) for kids with disabilities.
3. Understand autism is not one-size-fits-all. Some therapies will work better for some individuals vs. others. Establish a rapport with your child — focus on looking at their strengths and weaknesses and steer that into conversations with your child’s study team and other parts of your village.
4. Don’t be afraid to find a mentor for your child. Many individuals with autism such as myself would love to find a way to help you. Often my mentees tell me that being able to talk with someone who is on the autism spectrum, who dealt with similar things like therapy sessions and IEP meetings does wonders.
5. Know your rights. Many people don’t know about the Americans With Disabilities Act and the Individuals with Disabilities Education Act. The latter act may provide free or low-cost services for your child. Also, don’t forget about Achieving a Better Life Experience (ABLE), a tax-advantage account eligible to individuals and their families to save funds for disability-related expenses.
6. Create a home safety zone where your child can relax and feel safe. Make sure this area, whether in the child’s bedroom or another area in the house has a few of your child’s favorite interests. My parents had a TV in one of our common rooms with my favorite “Teenage Mutant Ninja Turtles” VHS tapes on a shelf. Being able to unwind on weekends, along with being provided TV time as a reward for doing things like homework worked well for me (hooray for reward systems!)
7. Find ASD support groups as soon as possible. You can only read so much online but being able to have people who get it will help you on both good and bad days. If you don’t know where to get started, do a search for Facebook groups that specifically relate to your state.
8. Understand anyone can be part of your child’s IEP team. I love working with child study teams but it’s important to have your village there in those meetings at times too. Physicians, family members and friends can be a part of these important IEP conversations. Find the people that understand your child best for these meetings. I wrote a letter to parents who are about to enter their child’s IEP meeting.
9. Embrace technology! Autism is a spectrum and I know communication is difficult for many of us. While I was considered on the severe end of the autism spectrum as a child, I’m now considered on the less severe end today as an adult who is a professional speaker. Some individuals on the spectrum are going to need lifetime care and may have difficulties with housing, employment, education and much more. Technology though with things such as iPads and text to speech and/or picture to speech apps can sometimes help with communication.
10. Build book smarts and street smarts. As your kids get older, realize the importance of vocational skills when applicable for them. Things such as learning to do laundry, driving an automobile and money management will help them immensely.
In the end, if you’ve met one individual with autism, you’ve met one individual with autism, so some of these tips will benefit some families more than others. My parents lived by these 10 above and countless more to see me become the man I am today. I hope you will be able to help your child succeed every day. Never give up on fighting for your loved ones, regardless of disability. As a final thought, I often tell parents and educators, whenever you have doubt in yourself, remember these three words:
You got this.