Managing Editor's Note: It has been my pleasure to get to know Roger Kulp, an adult with autism. Here he tell us in his own words what autism has meant and done to him. If you can offer a referral to a primary care physician (Albuquerque area) who would assist him, one who understands that autism is not simply a behavioral diagnosis and can manage his care and help him get to The Cleveland Clinic, please do so in the comments. Thank you readers. And thank you, Roger.
By Roger Kulp
I have been interested in trying to contact you for quite a while. If you want to publish this email at AoA I give you permission to do so.Actually this is more of a cry for help than anything else.
There is a lot that I don't like about AoA,but what bugs me the most is the fact you concentrate exclusively on children.There is this whole mindset that there were no autistic children who ever had severe biomedical issues, mitochondrial disease, inflammatory disease,what have you before there was thimerosol,or the current vaccine schedule in the late 1980s.When there were always autistics who had these problems, we just didn't recognize them.
As we have discovered that these diseases exist alongside autism,and may even cause it,the response should have been "Yes,let's take care of the children,but let's try to find out how many AUTISTIC ADULTS are out there,who have been suffering with these diseases for years,but have never been diagnosed."
Especially ,since we now know,that in many cases,it isn't so much what is in the vaccines,but what the shock of receiving so many vaccines so early does to the children,and that the same sort of shock can occur in unvaccinated children,who have suffered acute infection,as infants or toddlers.
This is vaccines,but it is a universe removed from mercury and thimerosol.Babies were always getting acute infections,and a lot of those who did not die developed autism.Only now do we know this.
I had acute bacterial meningitis with pulmonary complications,at five months of age.
According to my mother,I came out a different baby than when I went into the hospital. My autism has always been difficult to pin down (Sound familiar ?),but basically it was/is like severe autistic disorder but without MR/intellectual disability.Although I did not officially get diagnosed with autism until fairly recently,I am not like some neurodiversity ideologues I could name.I was diagnosed early with multiple learning disabilities,had developmental delay noted by teachers,as well as the old standby "childhood schizophrenia", a diagnosis that stuck into my early 20s.
Infection has always led to regression,and flareups of medical problems make my autism worse.My last major regression was in 2007,during another acute bout of meningitis.This period of regression lasted a year and a half.By regression,I mean the severity of my autism reverted to where it was when I was about six years old,and my adult intelligence remained intact.After this meningitis,and regression,I developed electrical seizures and stroke like episodes.
In addition to autism,I have lifelong failure to thrive,with hypermetabolism.and bowel disease,as well as a long history of idiopathic lung disease,a cardiomyopathy,conduction defect, and "myocardial angina".All of my heart and lung problems began as a teenager, none of which any of my doctors thought they were anything important,in spite of nearly dying of acute heart failure in my 20s.
I have had mysterious recurring high fevers since I was about six,and severe non-degenerative joint pain since age ten.I have been tested for cystic fibrosis,alpha1 antitrypsin deficiency,every type of autoimmune disease,and primary immune deficiency.I don't have any of them.
I did not complete puberty,in spite of "normal" hormone levels.I also have a lack of muscle development in the upper half of my body,and was born with no abdominal muscles at all.
My last primary physician agreed I probably do have mitochondrial disease,but refused to go ahead with a workup for it.saying I ought to worry about "stuff I could control,like making sure I don't develop high cholesterol."Personally,I think I have mixed mitochondrial and autoinflammatory disease,something that you could well understand.
I walked out on my doctor after he told me this.I have a guarantee that Dr.Bruce Cohen, in Cleveland wants to see me.What I don't have is another primary physician.I have spent months trying to locate another one.Every doctor that is recommended to me has turned me down because they say they only see children.If you could help find me one here in Albuquerque,I would be forever grateful.
I belong to the Noah Greenberg/"Refrigerator Mother" generation of autistics.As children,we were untreated,warehoused,or if we were verbal,dumped in mainstream classrooms to fend for ourselves.The time has long overdue for a formal public apology, to admit we were wrong on how we saw and treated autism.What's more,now that we know causes like mitochondrial disease,that these autistics could not have been tested for as children,those who have serious medical problems should be tested for it.
There are also enough purely neurodevelopmental reasons to autism delisted as a mental illness.AoA needs to take this up as a serious cause..
For far too long nondisabled (Yes I'll say it people with Aspergers are NOT truly disabled.) neurodiversity types have been the only voice of autistic adults out there. Neurodiversity ideologues like Laurent Mottron are hijacking serious autism research and threaten to take it over.The neurodiversity movement represents the single greatest threat to the well being of all autistics,just as Bruno Bettelheim and his followers did when I was a child.Both are based on a dangerously unrealistic and limited picture of what autism is.
I AM a puzzle.
Neurodiversity does not speak for me.
Roger Kulp is an adult with autism and lives in New Mexico.