A "Refrigerator Mother" Adult with Autism Speaks Out

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

Kim,

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.

Comments

[jennifer johnson]

i have a family member who has been a highly functioning autistic soul for 40 years...now, it seems over night he has regressed to that of a low functioning 5 year old...it has become a true mystery and has taxed his aging parents with his new care he needs....anyone?..we need any help you can offer...thanks!

[Cherry Sperlin Misra]

Rodger, A few more thoughts about mercury being the actual cause of your autism: You would have imagined that you were a relatively normal infant at the time of your illness. Not so- You would have had either one or two doses of DPT with high levels of mercury at the time of the meningitis . Mercury causes terrible damage to the immune system. Without the mercury it is likely that you would never have been sick and never gone to the hospital. You can read about the effect on the immune system in the research done at U.Cal. Davis, by Dr. Isaac Pessah. Your mother was probably not breast feeding you, so you had no maternal antibodies against infection. Then you went to the hospital, where I would guess you were given more mercury in injections such as Gammaglobulin.
Even today, your body can very slowly excrete mercury , if you protect yourself from further exposure:
Avoid fish / Refuse flu vaccines and hep B vaccines that contain thimerosal/ dont use products that contain High fructose corn syrup / Avoid dental work in which "silver" fillings are taken out or replaced, except by a biological dentist who can help you do this with less mercury affect on your body/ If you live near factories such as power plants that burn coal, try to move further away. You can also do biomedical treatments for removing mercury from your body . All the best!

[Carolyn M for Benedetta]

Benedetta,

I may be wrong, but I believe that "BTW" is "by the way", and that "nebulized ALA" is nebulized alpha lipoic acid. You can also get alpha lipoic acid in transdermal form for those children for whom candida is a problem; alpha lipoic acid can increase yeast if taken orally (and may also increase it if inhaled). I hope this is helpful.

[Benedetta Stilwell]

What is BTW and nebulizer ALA
Thanks if you answer.

[karenatlanta]

Beautifully said!

BTW..
Nebulized ALA
Riboflavin
CoQ10
Thiamine
Ginkgo
and ALCarnitine
Have done wonders for my son who bore 18 of the mito symptoms and severe hypotonia.

[Benedetta Stilwell]

P.S. from last blog. Both my husband and daughter also takes a drug called Ultram or the other new name Tramadol. It helps their muscle aches, yet is NOT adictive. Yet, this past year it has been put on the controlled drug list because as usually some FOOL found a way to abuse it. They crushing them and snorting or some foof thing.

[Benedetta Stilwell]

So your doctor commented on cholesterol and you did not even have high cholesterol. Well that figures.

You say you want the muscle biospy to prove you have mitochondria disorder? Or you hope they can treat for this disorder if the doctors only knew. This is not the case with my family, and you may well find it is not the case for you either (but I hope not). They can give you a dignoisis but no treatment is really available, unless it is asprin or ibuophorpene, or something stronger that is also dangerous like steroids or quionine (the same stuff they use for malaria). That is the case for my entire family: My husband, My daughter (we just got the results last Friday from a rheumotogolist, it is an inflamation not specified, and I was happy because we were thinking it was schelerdema - She had a HEP B a year ago, her first one, she went into nursing and had to have it, she had Kawaskis when she was two - six weeks after her DPT shot) and my austistic son, of course ran rhemutoid like fevers for years.

[Jill Rubolino]

Hi Roger,
What can I do to help you get to Cleveland Clinic? It seems that's where you need to be for sure. My son was seen by Dr. Natowicz, who has seen many of my friend's children as well. I am humbled by the fact that we ARE always talking about the "kids". I apologize for my own thoughtless omission of the many adults who have been suffering for many years, from the same chronic health issues as our kids do. Thank you for reminding me to keep my view a little wider next time.

[Cherry Sperlin Misra]

Dear Rodger, Thankyou very much for sharing your story. I think I speak for many people at AOA, in saying that it is almost painful to hear how you have suffered. Please keep writing in to AOA. This is a site where everyone can speak the truth as they see it and we listen with respect to anyone who speaks in sincerity.
I have one comment for you. It is possible that you think that your childhood infection was the cause of your autism, but in fact, (in my humble opinion) it is equally likely that your autism was caused by the treatments given to you at the time. I will give an example of what happened to me at age 2 or 3 , which I now think has changed me forever: I had played with a child who had measles and my mother went to a doctor who suggested to her that to prevent my getting measles, I should be given a series of injections. I was given a series of injections- at least 3, but probably more- perhaps 5 or 6. I now realize that the one type of injection that was used to prevent disease was gamma globulin, which contains high level of mercury. I lived through my childhood with a number of symptoms which troubled me a lot in various ways, and thankfully many of them finally waned after many years: Extreme shyness, blushing easily, hyperactivity and impulsiveness, head banging, night terrors (not nightmares), a facial tic, sudden laughing when another child got hurt , skin peeling off the hand as a young child. I realise that many parents of an autistic child would just love it if all their child had for symptoms were the above, but for me, it wasnt fun being this kind of person. I, today, believe that this personality that I carry with me even today, has been caused by mercury, and I cannot express how fervently I wish that all exposures to mercury should stop, or at least people should be warned so that they can protect themselves, if our governments and our doctors are not going to do it for us.I want suffering of all kinds to stop and I believe that autism related suffering is often worse because so many people do not understand and blame one for ones behavior. All the best to you Rodger, I am sure that you may find some answers and guidance here at AOA.
By the way, do you realize that your severe heart problems would probably be accounted for by the mercury theory of autism.?

[Elucidatus]

Dear Roger,

Thank you for your letter. You are a true hero. God Bless.