Roger Kulp:
CLASS OF 1978
Randallstown High SchoolClass of 1978
Randallstown, MD
Roger's Story
I know there are people here who have asked about me of late.My life has been not been fun or pretty.I live in New Mexico,and I have considered coming out there for the 35th reunion.
Some of you probably have children who are diagnosed as autistic,or know people who do.I am sure if you remember me in any detail,it was pretty obvious I was on the spectrum,too.I had a number of psychiatric,developmental delay,learning disability,and other assorted diagnoses in school,but unfortunately I don't know what they were.The records were destroyed.I was rediagnosed as an adult,after one of my many regressions,and I was found to be more severe than Asperger's,but not as severe as Autistic Disorder.I have come very close to being put in group homes or residential treatment centers a few times.If you Google my name,you'll find a lot of comments I made on autism blogs detailing the grizzly minutiae of my life.I have learned I am more seriously disabled than most.
I am one of those autistics who have a lot of serious medical problems,and have nearly died many times since I left RHS,either from acute infection,or from organ failure.I spent many years trying to find a diagnosis,and trying to find out why I was so sick.Some of you may know what a DAN! doctor is.I started seeing one in 2009,and learned I was born with a lot of serious metabolic problems unique to autism.None of which were known to exist until the 2000s.In 2012,I finally got a dual diagnosis of cerebral folate deficiency syndrome and mitochondrial disease.I live in New Mexico,but I see doctors in California and Arkansas.I have been taking a drug called leucovorin since 2009.Between that,and diet,my autism is pretty much gone,but I am still very sick...Expand for more
.I have never been able to gain any weight...my whole life.Just thought I'd toss that in.
I am now able to socialize normally,and people but that does not mean I can make close friends.The only one I had was my mother,who died a little over a year ago.Leaving me alone in a half empty house,with my cats,my bonsai,vintage tube stereo equipment,and one of the largest private record collections in the world.What I do now to pass the time,is dig in the Goodwill Clearance bins for junk to sell on eBay.My 86 year old father comes out from Pennsylvania to see me once a year,but he and a sister with Asperger's who does not like people are all I have.There is so much genetically wrong with me,I certainly don't want children.
I have spent so much of my life learning about the genetics and clinical presentation of metabolic autism,plus I have been able to come back from some pretty severe autism into the world of normality.Between the two,I think I would have a lot to offer the right hospital,or organization.If anybody has any connections to people who might be able to help me do this,please leave or send me a message.Also if there is anybody who has children in a similar situation to me,I would love to hear from you too.
Last fall,I was diagnosed with an unknown variant of a disease called Ataxia-telangiectasia like disorder.The genes were found by whole exome sequencing.There are 25 known cases in the world,in only four countries.I will be the first known case in the USA.I will be making my first visit soon to the A-T clinic at Johns Hopkins.So one of my visits in the future might coincide with the 40th anniversary reunion.Those who are interested in contacting me can reach me any time through Facebook.
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