Home > In Their Own Words > Autism Research Institute/DAN! Conference from a Father’s Perspective

Autism Research Institute/DAN! Conference from a Father’s Perspective

This is a guest post by Pat Kemp, Autism Speaks’ Executive Vice President – Awareness and Events. Pat, who is married, has three children and a stepson. One of his children is a young adult who has autism.

Twenty-five years ago when I first heard the word “autism,” there was nowhere to turn. No internet, most doctors didn’t know, psychologists had heard of it in grad school but weren’t sure what it really was. The support groups back then were primarily mothers seeking people in similar circumstances looking for that one hour of respite with other people dealing with similar situations. What was I to do? I was a father, working full-time with two other older children, searching feverishly to find any kernel of information to save my son with autism. I went to the library, frantically searching for information that would guide me through the process of saving my child who was rapidly fading away before my very eyes. After pushing and prodding, virtually panicking; I discovered that there was someone in San Diego named Bernard Rimland who started an organization called Autism Research Institute. I called and called until I spoke with him ‘live.’ He was kind, gentle, and understanding of my family’s plight. What he did was to give me ‘hope’ because he was collecting data to try to determine a path or paths to help families like mine whose children were fading away. I collected and sent Dr. Rimland all the data that I could gather from my son with hopes that it could lead to ‘something’ that may help him.

Well, as the advertising tagline said  “We’ve come a long way baby,”  I was impressed and amazed at what I saw at the Autism Research Institute/DAN! Conference this past weekend in Baltimore. There were hundreds of attendees searching for answers, including many fathers and grandparents. There were many experts in their respective fields sharing their knowledge, answering questions.  No matter where you stand on the autism topic, you would have appreciated the sense of community that was there. Much has changed since I started this journey into autism a quarter century ago with my son. With technological advances, I am now able to post this blog and share my experience. But I couldn’t help think to myself during the conference that this was the “House that Bernard Rimland built” many years before. Though there remains so much yet to do, it may never have occurred without the vision of one person, Bernard Rimland, who was kind enough to answer my phone call. This one person who gave me and my family hope. Thank you Dr. Rimland. You would have been proud of what I witnessed this past weekend.

  1. Katie Wright
    April 13, 2010 at 3:00 pm

    Beautifully said Pat!

  2. April 13, 2010 at 3:12 pm

    My 15 y/o dtr. has an autism spectrum type disorder. She is a sophmore in highschool (public). Unfortunately hasn’t received the help she needs due to me being unable to afford a tutor or extra educationaly type assistance. The school does have her listed as “special needs” and we do an IEP once a year, which is a joke. We do our “goals for the year” and they say they can pull her out for tests and provide study time at school….big deal! She wont ASK for help! This is part of the issue and they all know this! She has F’s in every class except choir and drama. She is basically at a 7th grade level. They have pretty much told me she wont graduate with a regular diploma…but haven’t given me any options. I too have had my “head in the sand” so to speak, hoping beyond hope this was all a maturity thing too..not ALL…but some, and that one day she would just snap out of it and get it all…I know that’s ridiculous. I have ALOT of chronic illnesses that keep me in bed alot and sick alot and heavily medicated. Trying to help her with her homework always turns into an ugly scene, and when she is home with me, I like to have good memories with her, not ugly fighting ones. I am just now starting to heavily investigate what options are available to us here in INdiana. I have her IEP on April 19th and will be armed with information this time for sure. Anyway, sorry to bend your ear, but I appreciated your blog and the situation you found yourself in at that time. thank you for sharing it.

  3. April 13, 2010 at 5:18 pm

    Reading you say, “No matter where you stand on the Autism issue, you would have appreciated the sense of community that was there”, is great to hear!! It is SO important that we keep our community together….no matter where you stand. No matter what, we all still have one important thing in common….AUTISM! We have to find common ground to stay united; put politics aside; and remember all is for our kids….

  4. Charlene O'Connell
    April 13, 2010 at 6:00 pm

    When my 20 yr old son was diagnosed there was nothing available for him except some very dedicated teachers and a speech therapist. Devin has progressed and despite all the advances, could not succeed at community college, in part because even the special services coordinator does not “get” autism spectrum disorder and expected him to TALK to his teachers.

  5. April 15, 2010 at 1:10 pm

    I’ve been to an informational session for the Brain Balance program. It’s an interesting and non-medical approach to strengthening the weaker side of the brain to balance it’s function. They are having success with ASDs and ADHD. We are thinking about it for our daughter who has sensory problems. Check them out!

  6. Amy Jones Yetter
    April 16, 2010 at 2:22 am

    Thank you for sharing your story! I was amongst the group in Baltimore and felt for the first time in a long time a sense of community and hope. Bernard Rimland did build that house and so thankful am I that he did.

  7. Mike
    April 16, 2010 at 2:25 am

    My wife and I also attended the ARI / DAN conference in Baltimore for our Aspergers son Reese. I learned so much that has been wonderfully helpful to our family. It was great to see these families and organizations to come together and support our wonderful kids!

  8. April 17, 2010 at 10:42 pm

    Don’t give up! Have faith. I learned so much on our journey…even helped myself. Don’t expect the school to help you…follow your gut…one step & sense at a time. Have compassion, find your purpose. Our kids are special and teach this world many things…find your child’s gift & go with it, relate to it, imprace it…

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