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Beyond the Media Hype: 10 Practical Lessons Shared by Nearly 50,000 Autism Parents

Posted on July 08, 2014

At last, autism is fast-gaining more attention from mainstream media than it did a decade ago, which, in theory helps bolster acceptance and awareness. However, the flip-side of this media attention is that at least half of the news coverage tends to be focused on hype – doing very little to help families dealing with autism, or to promote understanding and acceptance of autism. Here are 10 lessons learned from the nearly 50,000 parents of individuals with autism who have shared their stories, tips and experiences on MyAutismTeam – a social network designed just for parents of individuals with autism. This practical, actionable advice for autism parents helps all parents and educators get a better understanding of what it is like to parent an individual with autism.

10. Early Intervention and Evidenced-Based Therapies “Work Best”

When asked “What therapies, if any, work best for your child?”, parents overwhelmingly respond with one of the following: Occupational Therapy (OT), Speech Therapy, ABA therapy, or socialization skill classes. Six of the top eight autism therapies reported were some form of early intervention. Virtually no one (less than one-half of one percent of parents responding) said that more controversial, less researched, and often expensive treatments such as chelation, supplements or hyperbaric chambers worked best for their child.

9. It Takes a Team

An “autism team” is made of of more than just autism experts. In addition to the specialists (occupational, speech and ABA therapists, or the developmental pediatricians, neurologists and psychologists), parents also work hard to find “everyday health” and “everyday life” providers who understand autism. From the dentist and barber who understand sensory processing disorder, to the swim teacher, gymnastics instructor, educational consultant and public school teacher who are autism-friendly, many “autism teams” are 20-30 people deep and comprised of more than just doctors.

8. Successful IEP’s (Individual Education Programs) Are Led by You, Not the School

Every child with an autism diagnosis must have an IEP that spells out the child’s educational developmental needs and what resources, tactics and measurement are going to be provided by the school to ensure those needs are met. The advice from veteran autism parents is, “Don’t expect the school district to lead the process. Own it yourself.” The first time around, get an autism advocate if you can afford one. Start by understanding your legal rights from the Individuals with Disabilities Education Act (IDEA). Limit surprises and new information at IEP meetings by making sure you receive and agree with the school’s evaluation of your child before the meeting. Make sure your write S.M.A.R.T. goals and communicate with the school throughout the year (not just during periodic IEP meetings).

7. Talk to Your Child’s Classroom, Teachers & Principal About Bullying at the Beginning of the School Year

Kids with autism and special needs are often the targets of bullying at school. In addition to addressing bullying in the IEP and teaching their child how and when to report bullying, many parents proactively speak to their child’s classroom at the beginning of the school year to explain autism and the dangers of bullying. Talk to the bus drivers, teachers and principal too to enlist helpers and stop bullying before it happens. James Vaughan, a father on MyAutismTeam, shares how he handles this in our interview IEPs, iPads and Bullies.

6. Find the Right Extracurriculars

Individual sports (e.g. gymnastics, karate, swimming), music (particularly piano lessons), and scouting are the three most popular categories of extracurriculars. Each can help with self-confidence, balance, coordination and social skills. Each helps a child learn to be more independent while also having fun.

5. Set Up A Special Needs Trust

Many parents ask themselves, “What happens to my child if something happens to me and my spouse?” One of the best ways to protect the services your child receives and the care you’d like him or her to get in the event of your death is by creating a special needs trust and life care plan for your child. It’s one of those pieces of advice that is shared by many veteran autism parents, but rarely followed because people think that “trusts are just for the rich.” They are not. If you make more than $50,000, own or home or any other meaningful assets that your child might inherit, you should look into setting up a Special Needs Trust and Life Care plan.

4. Take Care of Yourself – No Really, Do It

Autism moms have stress levels that are similar to combat soldiers. One of the best things any parent can do for their child is to be healthy emotionally, mentally and physically. This is only amplified for the parents of a child with autism. Although most autism parents admit they don’t do a good enough job of taking care of themselves, many report that getting some respite care for exercising, going for a walk, running personal errands, seeing a therapist, getting a manicure or the occasional massage is critical to their well-being.

3. Keep the Romance Alive

If you’re able to get any time to yourself, it’s often because you and your spouse “divide and conquer” leaving very little time for together to nurture your relationship. But’s it’s critical. Regularly scheduled babysitters, date nights, and dedicated bedtimes for children are just a few of the ideas shared by parents in 7 Tips for Keeping the Romance Alive from Autism Parents.

2. Check in with the Siblings Who Don’t Have Autism

Most neuro-typical (NT) siblings quickly learn and understand that Mom and Dad need to spend more time with the member of the family on the autism spectrum. They show a level of compassion, unselfishness and caring that is beyond their years, but that doesn’t mean they don’t want to talk about and be acknowledged for it. Just checking in with the NT child on how they are feeling, acknowledging the differential treatment they receive, and listening to what they have to say can go a long way. Also, setting aside dedicated time with the NT child doing something that has nothing to do with autism is key. Says one parent, “Sometimes my child is just looking for ‘pockets of normalcy’. It’s totally reasonable for her to feel that way and she appreciates the effort, however small.”

1. Don’t Do It Alone

It’s important to connect with other parents who “get it.” Beyond your family and friends, talk with other parents of individuals with autism, frequently. Ask questions, vent, offer support, give referrals and take advice. Through our partnership with Autism Speaks, MyAutismTeam has grown from just 35 parents at launch two years ago to nearly 50,000 registered parents today. The 10 lessons outlined here are a tiny fraction of all the wisdom shared there every day. If you have other lessons to share, or questions to ask, please join MyAutismTeam. You’re not alone, and you don’t have to re-invent the wheel.

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