What This Post Is Not About: This post is not about healing autism or any of the expressions or manifestations of autism. Autism is not a disease or a disorder. If you interested in healing or curing autism, you are so on the wrong blog.
What This Post Is About: This post is about the fact that I have finally figured out that there is absolutely nothing wrong with me, and that I need to begin healing from my relationship with a mental health establishment and pharmaceutical industry that are doing me far more harm than good. I say this not as an anti-medical zealot, and I am certainly not telling anyone else what to do. I am speaking solely for myself, as an autistic individual who realizes that the system is all upside-down and backwards regarding what I need.
As many of you might have gathered, the past month or so has been very difficult for me. One of the triggers has been that I’ve inadvertently overcome (for the moment) my lifelong use of food as a means of sensory and emotional self-regulation. In other words, I’ve gone cold-turkey off my food addiction. Here’s how the current round began:
A few weeks back, I mentioned to the doctor who manages my medications that I had had a killer migraine and that it had been the first time in years I hadn’t been able to knock out the earliest warning signs with Sumatriptan. When he asked how many times a week I was taking Sumatriptan, and I casually answered, “Oh, about three or four,” he said that I was actually getting three or four migraines a week. The fact that I was recognizing the early symptoms and intervening did not mean that I wasn’t getting them; it just meant that I was stopping the worst effects of them. So, he suggested a preventive, Topamax, which is also an anti-seizure medication. I was to start out with one tablet a week, and progress to two, and then to three. He warned me that one side effect would be appetite suppression.
Nearly three weeks later, I’ve lost seven pounds I didn’t need to lose. Until yesterday, I was in so much emotional pain that it was physically almost unbearable. Much of the emotional pain was the result of withdrawing, without warning, from the food addiction and experiencing all the emotions that came screaming out into the open. As of Monday, the worst of the withdrawal and its attendant demons seem to have past. Now, I’m left mainly with the physical impact of the medication, which is not having an exactly inspiring impact on my emotional state: I’m nauseous almost all the time, I have no appetite, I lose my balance several times a day, and I’m suffering from acute exhaustion.
On Monday, I went to see an alternative practitioner. Bob had spoken highly of her, and I thought, “Why not?” Just to get the negative out of the way first: She was a complete and total pain in the ass about autism. She kept saying things like, “You’re not autistic” and “You don’t have to use such a negative word about yourself.” And yes, she kept saying these things despite the fact that I consistently responded with sentences like “Autism is a very positive word for me.” She kept on at random intervals until I just about wanted to explode. (I didn’t. Score one more for the autistic kid!)
But what she got right was astonishing. Right away, she said that I have a lifelong issue with feeling radically unsafe, as though every millisecond of every day, some disaster will happen and I won’t be able to handle it. I had said nothing past a few pleasantries and “Where is your bathroom?” She just saw it. At one point, she tried to do some mind-body work with me and, when I started crying uncontrollably, she asked if I were on any medication. When I listed out my anti-depressant, anti-anxiety, and anti-migraine meds, she said something to the effect of, “The medication is getting in the way of your being able to develop your mind and spirit. It’s numbing you out.” I had been thinking along similar lines of late. She suggested that I wean off my medications extremely slowly and carefully and go to an herbal healer (at the cost of about $600/hour—not happening) to cleanse and balance my system. Instead, when I got home, I bought an herbal cleansing system online that I’ve used before with very good results. It’s a first step. The package should arrive in the next week or so.
At the moment, healing my body is my life’s work and it doesn’t get much more basic than that. I’ve got a five-part plan, and I’m aware that it’s going to take a long while, and that it’s going to be a full-time job. It’s also going to be a very good reason to get up in the morning, because I like getting down to basics very, very much. Here’s the plan:
1. Cleanse my system using herbal formulae and lots of water (three months).
2. Wean myself off my medications and find natural alternatives.
I’m going to start weaning off the Topamax tonight. I added one tablet last week, and now I’m up to three, so going back to two should be fine. I reduced my anti-anxiety med, Lorazepam, by a third as of last night, and I actually slept better than I had in a long time. My aim is to wean off the Topamax and Lorazepam first, and leave the Zoloft for last. I figure a) the Topamax is new and I’ve lived without it for most of my life and b) the Zoloft takes care of anxiety, so I’m covered.
And yes, I’m being careful. Trust me. I value my health and my sanity very highly. Bob and I are going in together to see my prescribing doctor at the end of the month to discuss the whole matter.
3. Start buying nutritious food, cook it myself, and feed myself three times a day.
This one will be demanding, but I am determined.
4. Declare my independence of the so-called mental health profession.
If I don’t get myself away from the therapists and the psychiatrists and the mental health professionals, I swear to God, they’re going to drive me into insanity. Sometimes, I think that if I see my therapist one more time, my exhaustion will become so acute that I will never recover. And if my prescribing doctor tells me again that I just need to have more fun, I think my eyeballs are going to pop out.
I can’t begin to catalogue all the many things that aren’t working, so I will just give you my overall sense. First of all, my therapist, whom I see once a week, is a very nice man. However, I get the feeling that every week, we are practicing psychotherapy on each other. I am sitting there, trying to understand how his mind works, and he is sitting there, trying to understand how my mind works. The difference between us is that he thinks he understands how my mind works when he doesn’t, and I know that I don’t have a clue about how his mind works, except that it works differently from mine. This difference in both cognitive pattern and insight means that he consistently gives me advice that would work for someone who is neuro-typical and/or does not have my difficulties with language, auditory processing, and acute emotional/empathic sensitivities.
So, the last time we spoke, and I mentioned my desire to meet other autistic and otherwise disabled people, he reminded me not to forget about the neuro-typical people in my life with whom I get along and whom I love—namely, my husband and daughter—and that I should consider befriending neuro-typical people as well. Now, it’s not that I don’t have neuro-typical friends. I do. Some are in California, some are in Massachusetts, and one is in Minnesota. (I had another one out west, but he turned out to be on the spectrum. Yay! Next to Bob, I consider him my closest friend.) But all of these neuro-typical friends are ones I made when I could still pass for neuro-typical. In the present tense, which is where I currently live (sorry for the redundancy, but I couldn’t resist), I can’t pass. I can’t meet people in public settings and talk with them. I can’t go dancing. I can’t go to public lectures. I can’t go to synagogue. How exactly am I supposed to meet neuro-typical people, much less hang out with them in their usual haunts? My attempts to get them to hang out with me in ways that work for me have not been wildly successful.
However, all of these basic, logistical, physical, unchangeable realities of my autistic life, which I have explained patiently to my therapist, and in great detail, over the course of many months, seem to fly out of his brain for no apparent reason. Someday, someone will do some research as to why such important pieces of data would mysteriously disappear from the brain of an otherwise intelligent neuro-typical therapist with a PhD, but until he consents to be a research subject (and one of his peers consents to make him one), I just don’t see it happening.
And then there’s my prescribing doctor, who I like to call Dr. Meds. Like my therapist, he is a very nice man. As psychiatrists go, he knows his pharmaceuticals—to a point, that point being how medications react on the bodies of neuro-typical people. And of course, he would know only how they react on the bodies of neuro-typical people because, to my knowledge, pharmaceutical companies don’t seek out autistic people as test subjects. So, he gives me Topamax, which is an anti-seizure medication, which means it affects my neurological system—my very, very, very sensitive neurological system. So, cool, I’m not getting migraines. Or seizures. But then again, I never got seizures, so now, my brain is so overloaded with medication to keep it calm that I’m falling asleep in the middle of the day and falling down on a regular basis. And the appetite suppression? Appetite suppresion I could live with. The Topamax has put my appetite into a coma. It’s on life support. It’s got tubes sticking out all over the place and my former mother-in-law (who doesn’t speak to me anymore, and no, it wasn’t anything I said) has activated the prayer chain in her church on its behalf.
It’s pretty unbelievable when the people who are supposed to be helping you don’t know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism. It’s even more unbelievable when they don’t think they need to know anything about autism and they prescribe you medication.
5. Publish my book.
I know that it doesn’t seem like publishing a book is up there with weaning off medication and eating more carrots, but it’s been immensely healing to nurture my book toward publication.
And so, dear friends and readers, if you have any wisdom regarding natural remedies that you have found beneficial, by all means, please share. And if you don’t and just want to comment on this post, by all means, please do!
© 2010 by Rachel Cohen-Rottenberg
Another post with which I identified very much. I’ve been on the same meds as you, including Topamax for migraines. I absolutely dread migraines, so I hate the thought of you or anyone else having to endure them. I was very relieved when an kind allergist, whose wife had suffered from the same affliction, prescribed a beta blocker to prevent migraines for me. It worked perfectly. I went from a dozen or so migraines per month to none instantly and I haven’t had another in years. I don’t know how beta blockers work, but they are usually prescribed to lower blood pressure, so I’m thinking they are in another class than the others.
The best of you in your continuing journey. Thank you again for sharing it.
I’m not anti-medicine and I’m not into natural remedies either. Personally, if I can get by without any medication, I will. I’m now on blood pressure medication and it’s the first time I’ve remembered to take a medication regularly.
As for headaches, I rarely take anything for them. They;re usually a sign that I’ve been overdoing it and shouldn’t be suppressing my internal warning bells. The result is that medication is generally effective for me when I have to take it because my body doesn’t develop so much immunity to it.
IMHO, the less medication you’re on, the better. Particularly when it comes to things like anti-depressants. Good move.
ah, folks like you are the reason I really want to become a psych nurse practitioner. I hear the same story from many friends about the NT therapist and the prescribing Pdoc. I truly believe many autists DO have have different neurological biochemistry. It seems so obvious to me: there’s been some anatomical differences found, why wouldn’t there by biochemical ones? along with the more nebulous ‘autistic brains think/process differently from NT brains’. I mean, duh!
Personally, I wonder if once you get through this severe patch of crisis then your migraines will ramp down on their own. I’m thinking they are your body’s response to all the mental stress you’ve been feeling the past few months.
I’m trying hard to eat fresh fruit/veg daily. My body just feels ‘better’ when I do. I really don’t do the natural/herbal thing….I’m too logical and want to see double blind studies showing proof of efficacy! But I am curious to see what you end up finding effective.
Have you ever tried ….at the first signs of migraine….taking large side. of an OTC pain med and immediately going into a quit, dark room until you sleep . I also stik a light laendar scented pillow under my nose….(which would be bad for someone sensitive to smells) and put a cold compress on my forehead . I always wake up “cured” but if I wait until I hit the wall…..nothing seems to help . Perhaps it is different for everyone but I know mine are triggered from lack of sleep more then anything .
As to the holistic route ……I understand that many herbal chemicals will never get double blind studies because they wont make enough selling a natural product you can pick on the side of the road . My only concern about them is that some of the original wise women who found them as helpful were not living in our incredibly toxic environments . That said , I have found melatonin to be as effective as any other sleep med with much fewer side effects . An aspie friend who shares my chemical sensitivity….( tend to be allergic to everything)……has recently recommended low dose naltrexone (NDL), for pain , extra energy without anxiety . SHe has cancer and said it has made a lot of difference to her quality of life . There isn’t a lot of research about it but it appear to be low cost and low side-effects . The trouble will be getting my DR to let me try it……I guess the sellers of it don’t offer free golfing trips ?
I was on Zoloft for two years, gradually bumping it up until I was at 200 and no longer felt depressed because I no longer “felt”…interesting non-feeling because you don’t know what feeling feels like until you stop taking it . Sounds like you are still having lots of feelings on it but not necessarily the ones you want ? The only anti-depressant I have ever found works with fewer side-effects is Effexor which I do think has made my memory worse<—(-perhaps that is how it works….you just forget what you have to be depressed about ?) The reason I continue taking it is because it does the one thing nothing else has…..lets me function at a job which use to be full of melt-downs of uncontrollable crying and frustrated rage<—dealing with illogical people has that effect on me .
I'm looking forward to your book I just wish there was a requirement of all medical professionals to read aspie perspective books instead of the drivel of so many NT' anthropologist(psychs), whose only means of understanding us is filtering their observations and readings through their own biased experience of reality .
i had to laugh at the mental health profession driving you into insanity.
in my experience, some therapists can do that. (i’ve had a good one, but quite a few “duds.”) it sounds like yours had a bad case of the “shoulds.”
I’d recommend Chiropractic and Cranial Sacral. I’m not sure how much it helps with sensory overload etc. But it will decrease any long term physical pain and it can relieve some emotional stress as well. Chiropractic is a science with as much training as a lot of doctors. Cranial Sacral is a bit less established but still closer to mainstream than some other alternative medicine. I’m wary of medication to the point that I minimize my use of painkillers.
Sounds like you are finding ways to move on, which is good news. I’m interested in hearing of your experiences with alternative medicine. I used to be more interested in it, but when I actually tried it out, I spent a lot of $$$ and didn’t have any success or find any relief. It’s possible that I didn’t find the right modalities or practitioners for me, but I can’t afford to keep trying… I know a few remedies that work for me, e.g. feverfew for keeping migraines at bay when I get tension in my head. At present I am limiting myself to those. But I still like to hear of what works for others, maybe one day I’ll try again…
And please do keep working on your book – I’m looking forward to reading it!
An update: Declaring my independence of the mental health establishment seems to be going well. This morning, I got a mind-numbingly maddening email from someone at the place I go for therapy. It wasn’t from one of my therapists. (I’ll save the details for a possible later post.) As a result of this email, however, I began to realize that I did not need to play by the rules of the institution–going in and patiently explaining to both my therapists why I no longer wanted to engage with them in the therapeutic process. I mean, why should I do that? Talking tires me out, and besides, they don’t understand autistic people, which is the whole reason I want to quit, so what exactly would the point be? Instead, I wrote them each an email, and I just sent the emails off, and wow, do I feel better! Amazing. And after reducing my Topamax dose by a third last night, I actually felt like eating breakfast this morning.
Hi Rachel,
I’m new to your blog – your post on the intense world syndrome was doing the rounds on facebook and I loved it. I’m glad you’re doing better with the migraines and eating! Hope it keeps improving! I can’t believe your doctor telling you not to use ‘negative words’ like ‘autism’ about yourself though. One of my friends was told by her doctor that her son could not possibly be autistic because he smiled, and that ‘autistic people do not know how to be happy’. She didn’t hit her because she doesn’t believe in displaying violence in front of children, I think.
Good for you! I think you are on the right path
This sounds like a good idea. I’m not on medication anymore because it did not help me although others would say it probably did. It all comes at a price though and I didn’t like the price I was having to pay in the way I felt. I did not like the things I felt or even felt that the things that should make me sad weren’t and things that made happy weren’t. The things that should make us human. It was a nice reprieve for awhile. Kind of like getting away for awhile without actually getting away but, that’s not really how someone should live long term. About the therapy. I really like my therapist and she has been helpful but, she does not have experience with autism and that is my frustration at this point. I’ve kind of grown out of her. She was helpful early on for a couple years. Therapy helped me mature or rather put words and actions I already needed to do but, then there’s this part that my environment needs to change in order for me to get better and I’m increasingly getting burned out because I have no where to recoupe and just be myself. I have all the coping skills and I know them but, my home environment and situation doesn’t allow me to use them without pissing someone else off so what’s the point of having them. I’m too tired try anymore. My counselor thinks I need to check into the hospital but, I don’t think it will be restful either. I don’t know I’ve never been but, I think they will treat me psychologically and that will just frustrate the hell out of me more. I need help but, there’s no services for me. I’m too emotionally overloaded to keep trying.
I understand not wanting to explain why you no longer require the therapists’ services. When you try over the course of weeks or months to explain your issues and they still don’t get them, you realise it’s pointless and an unnecessary energy drain. I announced during one session of unhelpful, damaging therapy that I was leaving. When asked whether I wanted to discuss why, I could think of no good reason and refused the offer.
I have been more damaged in my attempts at getting support (all unsuccessful) than when doing nothing; my mental health would improve after ceasing contact with mental health services. I would swear off making future attempts, but found it difficult to allow opportunities to pass by in case I found the right professional. My last attempt involved so-called autism experts who caused the most harm yet; I am too damaged by the experience to continue seeking help and have lost all trust in professionals’ purported expertise.
I avoid medication because its use is never proposed within the context of an adequate treatment plan and never takes account of autism. A psychiatrist tried to prescribe with no follow-up appointments, except with my GP, and no psychotherapy. I find other ways to maximise my functioning, such as addressing the detrimental effects of hormonal changes on functioning.
Regarding the uselessness of explaining oneself about leaving therapy: I got a response from both my therapists this morning, and each response was quite professional and even handed. However, this particular line from one of them says it all:
“I hope you find a therapist and/or program specific for treating autism that will offer you the assistance you seek.”
Arggh. Eek. Splutter. Headdesk.
I don’t need a therapist or program for “treating autism.” I need a therapist or program that understands autism. Two entirely different things. But you all knew that. I just had to get it out before my head caught fire.
A good natural supplement is Omega 3. I recommend it. I wish you the very best on your new endeavor.
(i agree with the omega 3′s… hemp oil is my favorite. 5-htp helps me a little with depression, and gaba for anxiety i find is quite good.)
regarding the whole “treatment for autism” comment… it sounds like a few folks could stand to do a little research. failing that, i hear listening is quite a good skill for those in this profession to have. (*looks skyward, whistles.*)
Bluedancer and Bonnie: LOL! I’ve been laughing a lot today at the absurdities of life. When I read Bob the “treating autism” line, I could hardly get the words out, I was laughing so hard. It’s nice when when the cycle reaches belly laughter.
So tell me, what are the benefits of omega 3s, hemp oil, flax seed oil, borage, and black currant oil? I am keeping a list. (Whaddya think? If there’s a list crying out to be born, I will birth it, no matter what the personal sacrifice.
)
*headdesk* *headdesk* *headdesk* wait, they’re gonna claim we’re all performing self-injurious stims…
oh, btw, my miracle supplement is flax seed oil, borage or black currant oil. Unfortunately, fish and primrose oil give me the burps.
Two thumbs up. Sometimes it takes a lot of searching to figure out works, and a lot of adjustments to keep things working. But even when it’s bad and you feel alone or invisible and it’s easy to forget, you know there are a lot of us out here to support you–even if we seem to be busy spinning words in the air to see how they balance at different angles and speeds.
“Arggh. Eek. Splutter. Headdesk.”
I think I just got me a new motto!
(Kinda sums everything up, nu?)
Misfit, a poem for you:
A Muslim and a Jew,
(one is me and one is you),
were talking on a blog,
and one of them said, “nu?”
Now this Muslim and this Jew
are both autistic, nu?
and with echolalia, too (I think)
now tell me, who is who?
Which one of them said, “nu?”
The Muslim or the Jew?
But what does it matter, anywho?
We’re both autistic, nu?
And to each and every one of you: Thank you for sharing your insight, your experience, your care, and your support. Hugs and blessings to all of you!
I love it!
Hi Rachel
I can not stress this enough; Fresh vegetables & fruits. No pesticides!! Jason had chronic heartburn for years. He started eating fresh fruits & veggies and the hearburn is all but gone. Since we switched our eating, he has felt so much better. Take care of your body & spirit. It is crucial to your sanity. I am in total support of you taking the steps you need to feel better.
Jason bought me some over the knee socks as a gift. They were so soft and comfortable. Because Jason is obsessed with soft clothing, he had to try them on. We found that he liked the sensation of the soft yarn and the squeezing of the socks around his knees. They calm him. So . . I had to go buy some for him. Who cares that he wears silly socks if they make a difference in his well being. =) It’s the little things that can make a big difference.
Wow! I did a poor job of transitioning into an example in my post. Sorry about that =)
Hi Jennifer,
Thanks for your support and advice. We tend to eat seasonal vegetables and organic whenever possible, so I’m right with you on that!
Hi Rachel,
This is a very inspiring blog. Thank you for putting it all into words and allowing others to read it. Knowing nothing of any of this prior to visiting your site, I’ve found it truly enlightening, uplifting and mind opening.
Good luck with everything, especially getting your book published!
I highly recommend the book “Anatomy of an Epidemic” ~ “Magic Bullets, Psychiatric Drugs, and the Astonishing Rise of Mental Illness in America” by Robert Whitaker.
I was diagnosed with Bipolar II disorder in July 2004 and was treated by a psychiatrist and therapist for 22 months, until April 2006. When I began treatment I knew I was on the autistic spectrum (confirmed by my Mother who had me tested as a child). My psychiatrist was a nice man, but completely disregarded my claims of being on the autistic spectrum. He said “you aren’t autistic, you make good eye contact”. As I began treatment I knew that my central nervous system was EXTREMELY sensitive and that I would need to know as much about the medications as possible. Researching the medications became a “special interest” of mine. I poured over medical books so I could learn the mechanism of action of the medications that I was being given. I would ask my psychiatrist questions like “what is the half life of Lamictal?” Questions I am sure none of his other patients thought to ask. I became progressively worse on the medications. I clearly recall standing in my kitchen in April of 2006 and realizing that I would not be able to take ANY of the medications used to treat Bipolar Disorder because they all had side effects that affect the central nervous system. I knew my highly sensitive Aspie central nervous system would not be able to stand this assault by psychotropic drugs. I also realized that if I valued my physical health (which had always been excellent) that I would not be able to take the medications because the side effects would ruin my good health. I was devastated. I had no clue what to do, but I stopped taking every medication (cold turkey ~ I DO NOT recommend this), and spent the next 2 years detoxing. It took me 2 full years to recover from the medications. When my mind finally cleared enough to think straight, it occurred to me that my Aspie mind might just be able to develop a treatment regimen that would work for me WITHOUT using psychotropic medications. So I set about to do just that. I spent hours pouring over medical journals, sorting through all of the neurotypical stuff to find what would work for someone on the autistic spectrum. It took me 2 years to completely detox, and another 2 years to design a treatment regimen with my specific needs in mind. I had to undo what the psychiatric profession had done to my poor body and brain. I now have a treatment regimen that works for me. I am using food as medicine, some supplements that are easy to obtain(carefully balanced and combined), light/dark therapy, a weighted blanket, and adherence to a strict sleeping schedule.
The side effects of the supplements are wonderful! Omega3 is good not only for my brain, but also my heart health. The calcium/magnesium keeps my central nervous system calm AND strengthens my bones and teeth. The OTC Lithium Orotate balances my mood AND provides neuroprotective benefits.
I basically took my life back from the psychiatric profession.
I hope you too can find a treatment regimen that works for you. It can be done.