Perhaps the single most insidious and ultimately destructive promise during those early years after my daughter was diagnosed was the idea of “recovery.” There were a multitude of different diets, the gluten-free/casein free diet and the GAPS diet, that some said had “recovered” their child, making them indistinguishable from their peers. There were the bio-med treatments ranging from daily B-12 shots, hyperbaric chambers, ointments applied topically, vitamin supplements, chelation, homeopathic and naturopathic remedies to stem cell treatments. There were the therapies that made up the center piece of books claiming full recovery and the many doctors and specialists who supported them.
In the beginning we were terrified. I still remember that feeling. The nights of not being able to sleep, staring at the ceiling and worrying only to finally slip into a semi-conscious state of fitful sleep. The next morning, there were often those first 60 seconds upon waking when I’d forget the worries that had kept me up. Then reality would come rushing back and it was like being thrown into a bottomless pit of worry, stress and terror. The fear was relentless and was fueled by just about everyone we came into contact with. Our child was far too young to have predictions made about her future, and yet people made them and all of them except those stories of “recovery” threw me into further fear.
People compared her neurology to cancer or Parkinson’s and likened the various therapies and treatments to chemo; a necessary horror that no one enjoyed, but that must be done. And I believed them. I had to save my child. I would do anything to save my child. Various things were deemed more acceptable than others, but dig deep enough and you can find any number of people, doctors and specialists who swear by whatever it is they believe will transform a child who does not speak, who seems so frustrated and unhappy into a speaking child who is no longer in pain. Had this not been the case, had they not claimed complete “recovery” we would not have subjected our child to any of it, but instead, we tried all of them.
So much of what we were told seemed to coincide with what we were seeing. My daughter could not use spoken language to speak. She seemed to be in almost constant internal discomfort. She cried, gut wrenching screams of pain, regularly. Her sleep was erratic, her behavior confounding, her distress with things I couldn’t understand seemed constant, her inability to communicate what was going on made it all the more confusing. So many of the professionals we took our daughter to seemed convinced that their treatment or remedy or whatever it was would be the thing that changed everything. I desperately wanted her to not be in pain. I desperately wanted her to be able to communicate. I wanted nothing more than to ease her frustration. For years I never thought – perhaps everyone is thinking about all of this wrong.
So on one hand we were introduced to autism as a horrible thing, but that there were people and things that could “treat” it and if we were lucky she could “recover” and on the other hand we were told no one knew what caused it and there was no cure. It is this, seemingly two opposing thoughts, that many parents are introduced to. It is no wonder so many choose to believe the former and not the later, even when, in doing so, we head into a labyrinth from which there is no end. The third idea, that this is a different type of neurology and to compare Autistic neurology with non autistic neurology is detrimental to all involved and to suggest that one neurology can be trained to become a different one is not only an unachievable goal, but an unworthy one, was not introduced to us until much later.
There is nothing quite so awful as to see your child through the lens of those who are seeing nothing but deficiencies, challenges and problems. Assumptions are made about intelligence based on tests used for a different neurology. I often wonder what we would have done had we been introduced to Autistic people who didn’t use spoken language, but who typed to communicate. Would we have been so frantic? I don’t know. What I do know is that rethinking everything we once believed, refusing to submit to the idea that autism is the source of all that is wrong, seeing how non autistic neurology has its own set of deficits and challenges, and finding a way for our daughter to communicate has changed everything. If we spent even a small percentage of the money currently being spent on autism and autism research, on finding better ways to support our non-speaking kids so that they too could communicate using stencil boards, letter boards and typing keyboards, at least some of the panic many parents feel would subside.
Yes, the concept of people’s first introduction to autism being one of PANIC and FEAR depresses me. These folks who push things like bleach enemas need to have their underwear filled with all manners of unpleasant, itchy creatures. It makes life harder for autistic kids AND their parents because the parents are like OH NO! NOT AUTISM!
I’m not even sure what recovery would look like because I don’t really think normal people even exist. We have are advantages and disadvantages.
Also I am working on 2 books at the same time (maybe 3?) and one will involve a semi-non verbal autistic girl who goes to Julliard and falls for another girl and her mother is like, no, you are too autistic to be in a relationship and she will be like, excuse me?!
Should be good. I want more time to write all of these.
Wishing you lots of success with your various writing ventures!
I’d love to read that 🙂
It’s so awesome that the parents would feel better!
And just think of the autistics themselves! If only the money that was spent on quack therapies, or GFCF, or a third of the ABA money, were spent on communicating devices, or on even the most basic research on sensory therapies, just think what a huge difference it would make in creating a healthy happy functioning autistic community! Think of all the people whose anxiety as an adult wasn’t at unmanageable levels because of all the therapy they had as a child, training them to pass as a NT! Think of all the people who self-esteem wouldn’t be in the toilet because they were continually labeled as bad for the first 15 years of their lives! Think of all the people who could get two or three steps closer to their life potential, because the energy around them didn’t go into “quiet hands” or into “look me in the eye”.
What’s interesting (not the right word, but I can’t think of the word, so try to work around it) about all that you’ve written here, this was not something I considered during those early years. Autism was painted as so terrible and it was suggested by many that it could be “removed”, as awful as the various treatments seemed, we thought they would be worth it, because we believed our daughter would be so much happier. This is why when I read Julia Bascom’s blog I was completely blown away. It was literally the first time any one had suggested autism was anything but what we’d been told.
I read her entire blog and then read it all again over a few days. I was mesmerized by her description of life. It was because of her blog that I then found others and finding those blogs opened up an entirely new way of thinking about everything, not just autism and Autistic people, but everything. It was as though someone had shown me a beautiful, new universe that had always existed, but that I had not known about. That was on March 1, 2012 and we’ve never looked back.
Do people know how ridiculous it sounds when they say they “recovered their child”? Makes the kid sound like a stolen car..
Also, my husband and I have been eating gluten free for the past 5 weeks because it turns out he has a gluten allergy. I’m still fantastically autistic but he’s feeling much better. 😀
So glad he’s feeling better. I have a friend who recently found out he’s lactose intolerant, he also feels much better, reports that his concentration has increased and is able to tolerate small talk. (I just made that last part up.) 🙂
What relieved your child’s pain?
I’m not sure. Certainly a large reason (I think) is probably due to natural maturation. As she’s grown older the things that bothered her terribly as a child no longer do. Most of her digestive issues have resolved themselves, melatonin has been extremely helpful in sleeping, though she sometimes decides not to take it and still seems able to sleep through the night. The change in air pressure hasn’t bothered her for about a year now…
Emma’s sensitive to air pressure changes? My father and I, aspies both, occasionally have terrifying reactions to strong drops in air pressure – on one memorable occasion, an hour of uncontrollable nausea and shaking, followed by an intense headache. I wonder how common a sensory issue this is for people on the spectrum?
Well, I do biomedical treatments with a naturopath for my daughter and am happy with this decision. Our pediatrician wanted to put her on 3 different pharmaceuticals, and I think that is barbaric for a 4 year old, so I said absolutely not. Some vitamins and a diet change has made her world a happier place, and has helped some underlying health issues resolve. I would do the same for myself if my body wasn’t functioning optimally. I don’t do it because I need her to change who she is, I do it because she was not healthy. Lab testing has proven this. There are many studies which have been done linking digestive problems, immune and mitochondrial issues, etc. with autism, and I just can’t ignore these. Will it help my daughter speak? Truly, she spoke her first 20 words the week we removed gluten and dairy. It’s really more about giving her what she needs to grow, and that includes body and mind. Recovery means something different to everyone. I just want a happy, healthy kid.
Thank you Robyn, I agree very much with your approach. I feel like the autism community is often so black and white. Either full acceptance and no consideration to possible biological deficiencies, or full on ‘recovery’ and autism is horrible and to be destroyed at all costs. Can’t we find a happy medium?
Well, not totally. The science isn’t completely there. There’s too much room for people to come along and try to take advantage of autism fears and there is causation and correlation to consider as well.
One thing we noticed with Katrina is that real life helped to desensitize her to the various upsetting environmental stimuli. I used to take her for walks and the wind or large trucks would have her sitting down in the road and covering her ears. I took her anyway. We only had one car at the time and We had six other kids who needed time and attention. Eventually she got used to it. We also didn’t cater to her desire for sameness. In a house with that many kids chaos was pretty much our general life style, although I tried to have a routine of sorts, she became more flexible as a matter of survival. Since she had been institutionalized for 4 years before she came to our family, Katrina also had some learned helplessness, as in “not having enough strength to open a car door or snap her own jeans” at age seven, and “not being able to chew her food.” However, she could plug in a CD player, and she could eat an apple, seeds and all, without choking. We refused to do anything for her that we thought she could do for herself, and she rose to the occasion. Everything She learned and showed us was a cause for celebration. I have to admit that sometimes I was a mean mom, and not very patient. I am much more patient now and she taught me that. Probably over the years she has taught me much more than I have taught her. We did think Katrina would eventually “recover” and we tried a bunch of different things to help her. Now, we are definitely OK with who she is and grateful for the amazing experience of being her parents.
I too went the GFCF route for 6 mos I was religious. Within a few weeks my son said “changing, I wonder why?” He was babbling, making noises, and had single words prior to this so this was like a real sentence! We of course could not stay on it because he simply wouldn’t eat after a while & rather than give him a feeding tube we had to give in. I think it gave him a jumpstart & I don’t regret it & we still give him those GF foods he likes & try to eat organic, gmo free, & avoid red dye # whatever not to recover him, but to keep him regular and healthy. I also continue to see a difference in his alertness when he’s taking omega-3 vs when he’s not. That seems to be the one consistent supplement he responds to along with Vit D & probiotics. He never gets sick & only sees his Dr for a once a yr visit on his birthday each year, so I’m not going to mess with success. I do occasionally still use the epsom salts in his bath because it calms him.
Hi there. I found your wonderful blog by looking for someone connecting trauma and autism. You did! I feel like this could be the link between autism and all of these “recovery/cures” like GAPS and chelation etc. If the caseins are toxic and the person has an over reactive nervous system then maybe removing the caseins is the one thing that brings the “recovered ” kid back to a calm and focused state. And for another kid who tries the same thing , the level of life trauma is still too high to achieve a calm nervous system. So it’s the inability to cope with the traumas of everyday life that keeps a kid focused inward and you HAD to try everything reasonable to see if it was making an impact on the trauma response. It makes perfect sense in my mind and your earlier posting helped me see this. I’m an OT and on a mission with my families to see trauma, big and small as our enemy no. 1. If I was a parent I would be always looking for treatment too. I think that this could really be an answer for all. The hard part is deciding how valid these treatments are for each child ..
I just am not sure it works that way.
My 32 year old daughter (with Asberger’s) has long supported the need to develop and offer services that support those with autism to have a better quality of life. Let’s listen to the parents AND (when they can let us know) the children themselves!
Sadly even when doctors accept something as a different neurology you still have to deal with them focusing on the negative. I’m 7 months pregnant and when I was around 5 months pregnant they did an ultrasound – one of the fancy 3D ones that they use to examine everything (we were sent for this because my mother has spinabifida…the baby incidentally did not have spinabifida) – that showed that our baby has ACC, ACC is Agenesis of the Corpus Callosum. It means that the part of her brain that transmits signals between the two hemispheres is missing. It tends to actually mimic Autism in its symptoms (and the symptoms vary greatly between “high” and “low” functioning but usually, barring no other issues, fare on the end of Asperger’s like symptoms). This, non-life threatening, non-painful neurological difference was presented to us in such a way that until they actually got into explaining it (and I then did research at home on my own) I was certain they were going to tell us that our baby was not going to survive. They acted like it was a horrible thing. We on the other hand, once we were certain the baby (who we later found out is a girl btw) was not going to be in pain or in any kind of life threatening situation, were kind of non-phased. We already knew autism could be a possibility as I have Asperger’s (or thought I did…..it is now possible that I may also actually have ACC..its very commonly misdiagnosed as autism…I’m suppose to be having an MRI to check for it after the baby is born) and my boyfriend has signs of it in his family as well (although undiagnosed). So, this was the same symptoms with a different cause. We were not thrilled with how the Doctors acted about it but we tried to be understanding about it (it IS a high risk clinic and they, I’m sure, deal with patients themselves freaking out a lot) but I just feel like focusing on the positive (the fact that it isn’t painful or deadly and that often the symptoms are vague and that knowing about it so early means any kind of extra help she needs will be easy to prepare for and find) would be much more beneficial to their patients than freaking them out by acting like its the worst thing to ever happen.
I think we were lucky because we didn’t have the money for most of these things (though we did try the diets…) and because I related so strongly to G that I “knew” he would be “ok.” He is verbal, though – and I applaud your efforts to find Emma’s way to communicate! That’s a different project…
As you probably know by now, there is a LOT more happening than the obvious regarding ‘the final solution to the (individual) autistic question’.
The reason you were ‘sold’ that particular bill of goods regarding your daughter was that 1) those selling it knew you would ‘buy’ it; and 2) it would make you vulnerable to their machinations.
You’ve written in this series-of-documents about THOSE, or at least some of them. (the machinations, that is)
The reason they do their ‘sell’ is that it tends to be a very reliable means of getting ‘money and power’.
Some of the underlying assumptions regarding ‘treatment’ appear to be: 1) parents see their children as ‘bodily extensions’ – in short, most parents are working on a subclinical case of Narcissistic Personality Disorder. 2) Acquiring a ‘defective child’ induces Narcissistic Rage, manifesting as ‘blind panic’, anger, and a ‘burning desire’ to erase THEIR defective nature. (The Parents’ defective nature, not the child’s) An example of this would be the Wright Collective, aka ‘Autism Shrieks’.) 3) Because the parent or parents have a (subclinical) case of NPD, they’re going to focused on the APPEARANCE of Normalcy (so their child does his duty regarding Narcissistic Supply / Worship). Never mind that Junior isn’t going to be actually helped by ABA, chemical castration, bleach enemas, strange diets, beatings, ‘Deliverance Sessions’ at the local church, routine severe abuse, etc. Junior will no longer ’embarass his or her parents’ by inappropriate behavior’ once he/she is ‘cured’.
The reality is that Junior will not be cured – save, of course, if someone KILLS him or her – either through physical murder… Or worse, what might be named ‘soul murder’ – the destruction of a person, and replacing them with a REAL ’empty shell’ – a thing that exists solely to please its owners.
Narcissists don’t mind if you’re dead inside, as long as you give them the worship they are due. They’ll cheerfuly ignore you then – you’re just another tool on their way to becoming a small-g god (or so they believe)
PS: while I endured ‘the real thing’ growing up, the parallels I see between that trio and a large segment of society are frightening. The experience most autistic people endure *closely* resembles what I (and many others) endured growing up as children of Narcissists / Psychopaths – so much so that the chief difference seems a matter of
consistency and intensity, rather than attitude and mindset.
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Hear Hear we need to find ways to make those connections, open up the channels in creative ways. Love, Joy, acceptance finding activities and connections that make that flow to us are the basics no matter where the child is on the spectrum
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