Scott: Hi, I’m Scott Kampschaefer and I’m a therapist here in Austin, Texas, and I’ve got here with me Amy Kilpatrick, who is the parent of a young adult with autism, and she’s agreed to answer some questions with me here today. So thank you for coming in and meeting with me. I don’t often get to interview guests in my office. It’s a rare treat.
Amy: Thank you…
Scott: So one of the things I’d first like to ask you is how is dealing with a child’s autism different from other...we might say...garden variety losses?
Amy: Okay. Well, first of all I would characterize it as different from other losses in that it isn’t really a loss at all. Having a child with autism or other disabilities is certainly different, and it’s different in its expectations that I as a new parent thought I would be having with a new baby...but I don’t characterize it, and other parents that I know in the disability community really try not to characterize as a loss, but just as a difference. But that being said, my son, who has autism is 22. So there were certainly times during his growing up that I felt a certain amount of grieving for what wasn’t. It makes me feel emotional talking about it, mostly because I’m so proud of him about how well he’s doing. Those times you fight fall into the grieving and kind of loss idea are those times of large transitions. The transition from being at home and going to preschool, the transition from elementary school to middle school…
Scott: It’s those nodal points…
Amy: (laugh) With me getting teary-eyed makes it seem like those were a big loss...it’s just that when I talk about my child I get emotional…
Scott: Plus there’s may be a little more intensity involved than if it were a ‘normal’ child going through those periods…
Amy: And also in the disability community we never call anybody normal. There really isn’t any ‘normal,’ but for children without autism, they are referred to as neurotypical, as opposed to students...children...I’m also in education, so I sometimes say students...but also children who have disabilities, as opposed to neurotypical children. So there’s kind of a...what people talk about as a grief process a lot of times in those big transitions because your child is maybe not doing the same things and it becomes really clear at those big transitions when people are celebrating big moves to new stages of life and maybe your child is...chronologically making the transition, but not in the same way as other kids are. So particularly during those times I feel parents, and myself, need to be aware that’s going to happen. Like you might think “Okay, you’ve really come to terms” and things are rolling along real smooth and “Bam,” you get hit during these transition times and that can be a real emotional experience if parents are prepared for it, it helps make it a little smoother if they have support during that time.
Scott: Yeah, absolutely. Okay, and then I also wanted to find out how has raising a child with autism been positive for you. You may have already mentioned.
Amy: Well it's in one way that it has been a really positive experience for me is it taught me the importance of seeking out support and support of people who are going through...you know the same things and so I really and that was not something I was really comfortable with just my personality so it was a stretch for me to learn to start going to those support groups and there... there's plenty out there if you're willing to do it as a parent, but that was a really hard thing for me to actually do and then when I finally did it was it was really good, and so I think that's, you know, a positive and as it has served me well then, with other things to understand that getting support is really important. And I will say that for myself finally stepping out and getting the support of the parent support groups or the things that, you know the school community offers for parents. It was weird for me to realize these are my people now, you know, because it was stepping into a whole culture even really that I did not know about, so that was it took some getting used to but once I did then it was fine and I was comfortable but... and so the positive... another positive has been just learning to appreciate small gains and small successes because as a parent of a child with a disability sometimes your celebrations of success are different than what other family celebrations of success might be. So and at every stage from, you know, early childhood through adulthood...so... that's been a positive I think for me, growth areas, learning to celebrate those may be smaller, or just different periods of growth and celebration.
Scott: Absolutely. Okay, and then I had one other question: that was what's one thing that you'd like parents have children autism to know kind of going forward.
Amy: Wow, one thing that another parent told me early on...my son was diagnosed when he was three, which is a pretty early diagnosis (was) it was a blessing to finally get a diagnosis because it helped me to not feel like it was just a horrible parent. I didn't know how to make this child happy, but to find out that there was something going on, but then that meant there was something that I could do. So for the piece of advice I got at that time from another parent was to remember that it's a marathon and not a sprint, because I was as many parents are, I found out I was frantically searching for everything I could possibly do to fix it. So that was a great piece of advice that it's a marathon and not a sprint and to just understand that there will be, you know, be real hard times but also really really good times and that is especially for people going through the early years, that it does get better, though those early years for me were certainly the hardest and it does get better... and then just understand that, especially those transition times, you may feel like you kind of kind of dip back to used to be. So...so just getting...getting (and) using the support that's out there, searching it out and getting a support that's there...because it is there probably helps.
Scott: Well so I appreciate you coming in and this has been a very illuminating and enriching discussion, and I think there's a lot that folks can kind of take from this to help them on their journey if they have autism or developmental disability or something of that sort to kind of work with and to help get through some of these is important, you know, milestones that have individuals and families that struggle with this issue or deal with this issue. So thank you so much and take good care.
Amy: Thank you.
About the author: Scott Kampschaefer, LCSW is a private practice therapist in Frederick, Maryland. He has an extensive background in working with depression, anxiety, and bipolar disorder at a clinic for older adults with these disorders in Austin. He now works with adults and adolescents 14 and up in private practice. His new e-book is entitled Life’s Lessons from the Young and the Old and is available for purchase on Amazon.
Visit our page on grief counseling to find out more about how Scott can help you with grief and loss issues.