Taking the Awe out of Autism

I once subscribed to a prominent newsletter that publishes information about autism resources in Southern California.  In the last issue that I received, an organization was included whose acronym ended with the letters "c a" which stood for "cure autism".  I contacted the editor of the newsletter and let her know I thought using the term cure when referring to autism was not a positive viewpoint.  She responded that she did not agree and had no problem including any organization in her newsletter with the mission to cure autism. Now, I respect opposing viewpoints that differ from my own as long as that opinion isn't meant to harm or infringe on the rights of others.  The autism community is filled with individuals from all walks for life with varying ideas on a variety of issues, some of which I agree and some which I don't.  I try very hard not to judge others about what they believe as long as those opinions are not ...

Last year, this article was published in the on-line content of Johns Hopkins University Press "Narative Inquiry in Bioethics Project Muse".    Here is it in its entirety. As Jacob’s mother, I made it a priority to make sure Jacob always had what he needed.  Today, the result is a Jacob representing over 15 years worth of love, patience and so many supports, services, and therapies that I can’t quite remember them all.  He’s a confident young adult.  He attends public high school and is on track to graduate with his class next spring.  He has a part-time job at Best Buy through his school’s Workability program.  He has a few friends with which he frequently interacts and plans weekend stay overs at our house.  He manages all of his school work on his own with no supports from professionals or me.  He even advocates for himself at his annual IEP.  By most accounts, Jacob is a success. While I know that the combination of all the prof...

As Jacob has now graduated from high school, he's planning for the next step in his life.  As much as he would like to find a job, have a girlfriend, and move out on his own, he has absolutely no idea on how to accomplish any of these goals. So far, I've had to support him in everything that he's doing.  I've helped him apply for SSI which he is now receiving.  I helped him register to attend a local community college and make an appointment with the DSPS counsellor.  He didn't know what classes he wanted to take, so we reviewed the class description of every class that the school offers, and I mean every single one, until we found a few that he'd like to enroll.  I helped him find an internship at a local doggie daycare, and if he does a good job, the owner might consider hiring him for a permanent position. So, Jacob is doing fairly well, but without my support, none of it would be happening.  While I'm happy to help, the entire experience shows m...

A month ago this Friday, Jacob put on his cap and gown and walked on stage to get his diploma from Culver City High School.  That was definitely one of my proudest parental moments. Now the fun really begins - how to plan for the next stage of Jacob's  life.  At this point, he's unsure if that includes college or trade school, but one thing is for sure: he will definitely need to find a job.  I would love for him to find something part-time while he makes up his mind what direction his life will take. Jacob and I were extremely lucky to have a great, supportove staff at CCHS including his awesome Workability instructor, Dan Phillips.  Over the course of Jacob's high school enrollment, Dan placed Jacob in three Workability jobs and took his students on field trips to several local colleges.  They also visited the local Department of Rehab office, and Dan was kind enough to summarize the meeting in an email to me. These were his notes from the mee...

Raising a child is challenging, special needs or not.  Throw in difficulties with sensory integration, executive functioning, and social thinking and those challenges can at times seem insurmountable.  I remember there were days when I could hardly wait until Jacob went to sleep so I relax and collapse on the sofa.  The end of the day just couldn't come soon enough. So is it any wonder that we as parents with children with autism forget that there is life beyond autism?  We are under so much pressure to make sure things run smoothly at school, that all of the doctor and therapist appointments are kept current, and all of our bills are paid and not past due.  So for Jacob, I considered being his caregiver as my part-time job.  Besides being his mom, I was his personal assistant keeping his calendar, finding him competent service providers, setting up & facilitating play dates, and making sure everything was prepared for the next IEP. It's a lot ...