Welcome to the Louden on Autism Q & A. This week, I’m back to answer a question submitted by a website visitors to shed light on some of the most important questions about autism. I receive questions every day, and I want to make sure that the answers to these important questions are being shared with all of you.
Please know that these are my opinions and my answers come from my research and my own personal experiences. Of course, each situation is different. All of us as people are different. And no two people with or without autism should be treated the same exact way.
This week, I received a question about autism and the younger years. These can be very difficult for many parents, so let me know if you ever have any questions. Here it is…
My son is 10 and was finally diagnosed at age 6 with ASD. We have overcome many obstacles and have many left. My son is fortunately high functioning and quite intelligent. It has been quite the learning experience. For the last 5 years, I’ve had to fight the biggest battle that I never realized I would have: Education. The community of school is so unknowledgeable of how to reach ASD children as well as manage behaviors that it can be detrimental. I have learned so much that I have become a strong advocate and am happy to say have finally forced the school district (took me 5 years) to make some small changes that will help not only my son but others.
You are on the spectrum so what difficulties can be expected during his adolescent years? How can I help my son accept his diagnosis, be proud of who he is and reach his fullest potential? How can I advocate more and help him do the same?
One of the biggest challenges I faced during adolescent years was a desire to have more friendships and date, without really understanding what that was or why I wanted it. A lot of popular culture shows high school as being a certain way – close friends, dating, etc. One thing to work on is making sure there’s an open communication channel. Help him discover what he really wants, and reason through why he wants it, and what he hopes to gain from it. I felt there was a way I was “supposed” to be, and it led to me trying to hard for things I didn’t really want.
After that, it was also the increased independence in later high school and early college. I wasn’t really prepared for the significant shift from “clear daily schedule” to “manage my own time” and it led to some poor outcomes. My best advice is just to do your best to forge whatever bond you can so that he feels he has someone to share his emotional state with – what he wants, why he wants it, and what he’s struggling with.
As for being a better advocate? I don’t really know. To be honest, I’m completely flying by the seat of my pants here. I think in some ways it may be harder to be a parent advocate. I’ve found that revealing some of my worst moments have been very helpful in framing for people the idea that although I speak well, I’ve had some significant struggles still, and help them understand where I’m coming from when I talk about my experiences.
Unfortunately, as a parent, it’s not really ideal to be hanging your son’s metaphorical dirty laundry out for others to see. It’s a balance of preserving his trust in sharing things with you, to help him get the help he needs. Honestly, I’m really hoping to make more materials available that may help in an educational context that might be useful for parents to share with educators, but that’s just one of those “I hope to do” plans right now.
I would say be clear and don’t take “no” for an answer if you know it’s something he really needs. The ADA requires reasonable accommodations, and it also lets the people asking for the accommodations define what they need, *not* the person giving them. The person giving them only argues whether or not they can offer that accommodation at reasonable expense and inconvenience for those involved. Your son has a right to the same educational opportunities as everyone else, don’t let the schools forget that.
Thanks for reading. Check back soon for another Q&A.