Stem Cell Treatments

“You thought my autism was hurting me and that you needed to remove it, but you did not understand that it is a neurological difference and fear caused you to behave with desperation.”  ~  Emma on the topic of the three stem cell treatments we did in 2010

Every now and then people find this blog through a site that promotes stem cell treatments in Central America.  In our long and twisted journey since Emma was diagnosed with autism, stem cell treatments were something we once hoped would help our daughter.  It is a decision I deeply regret.  People ask me whether I think it may have helped her.  I do not.  People have wondered whether the tremendous strides Emma has made are not directly related to those stem cell treatments.  They are not.  I can say this with assurance.   If you want to learn more about how Emma is communicating, click on this link.  The stem cell treatments put Emma’s life in danger.   We have no way of knowing what we may have exposed her to because of those treatments.  For the rest of our lives we will not know if the stem cell treatments harmed her.  We will never know and that is a fact we must live with.

In April of 2010, we believed anything was worth trying if it would help our daughter.   Just four years ago, I believed being Autistic meant a life of untold misery.  Autism was a list of deficits.  At the time, I doubted whether my daughter would be able to learn to read and write, let alone speak in a conversational manner.   I had no idea what my daughter was capable of.  I had no idea that she already knew how to read.  I know this now because she has told me through her writing.

We took Emma to Costa Rica and later to Panama for three rounds of stem cell treatments despite being strenuously urged not to go by a team of stem cell researchers out of Harvard.  We were cautioned about the experimental nature of this procedure.  We were told it was risky, dangerous, highly invasive, and yet we made the decision to take her anyway.  We did this because we loved our child and, at the time, believed anything we tried was worth it, if it might “save” her.  (I use that word purposely because this was what we once believed.)  We believed we were giving her a chance at life, we believed, if we did not try this, we would regret it.  We held out hope that maybe, just maybe this would help her communicate and thereby give her the opportunity to form friendships.    

I’m not going to go on a rant about all the misinformation we were given by well meaning professionals, educators, medical experts and pretty much every single person we came into contact with on the subject of autism and our daughter, all of that is pretty well documented throughout this blog over the last year and half, but I will say this, our response to autism and what we believed that meant for our daughter was not unique.  We knew of a great many parents who believed just as we did, that any treatment was better than doing nothing at all.

This blog began as a result of those stem cell treatments.  I never thought more than a handful of people would read what I was writing.  This blog was a way to document the changes we hoped we would see because of the stem cell treatments, a treatment that is not allowed in the United States, a treatment that has since been outlawed in Costa Rica as well.  We believed we were doing a good thing.   For those of you who never contemplated such drastic measures, I understand how incredible this must sound.  For those of you who are Autistic, I can only tell you how sorry I am that this was what we once believed.

We all make mistakes.  Some of us have made terrible ones; things we cannot undo, take back or cancel out with an apology, no matter how heartfelt.  What I can do is continue to learn, hope to do better, and do all I can to counter that list of deficits so commonly attached to an autism diagnosis, while signal boosting Autistic people’s words, including my daughter’s.

Last night Emma and I discussed those stem cell treatments from four years ago and she wrote the words I opened this post with.  When I told her that if I could take those treatments back, if I could cancel them out, I would, in an instant and without hesitation.   She then wrote, “Many parents have not loved their children as much as you.

This isn’t about forgiveness, I know she forgives me, this isn’t about publicly beating myself up, this isn’t about me learning to forgive myself, this isn’t about me at all.  This is about misinformation, where that misinformation leads us and the inherent problem with speaking about autism as a “medical disorder” as opposed to a neurological difference; a difference that carries assets and deficits just as non autistic neurology does.  This is about oppression, segregation, prejudice and how that plays out in every aspect of autism, autism research, autism treatments, biomed interventions and almost all of the various autism therapies that currently exist.

“Put it on the blog!” Emma said, after we talked about all of this.  

“Really?  You want me to put this on the blog?”

“Yes,” she said and then she leaned over, gave me little kisses and added, “Aw… sweetheart…”

Emma walking among ruins in Panama ~ 2010

Emma walking among ruins in Panama ~ 2010

25 responses to “Stem Cell Treatments

  1. OMG Emma and Ariane what an honor it is to read about your journey. Thank so much for every thought, every word and for your bravery. ❤

  2. thanks for digging into such a painful thing and putting it out here to counter all the misinformation. you and Emma are very brave to share it.

  3. Thanks for this, Ariane. Emma is lucky to have you and the autism community is lucky to have you as well. xx

  4. What a milestone you have reached to be able to write about that scary painful episode with such openness and honesty and to finally know Emma’s thoughts around it. Wow. What a journey. xoxo

  5. Emma, would you consider writing about doing the RPM at home with Mom? I think Nick and many others, (or perhaps it is we, the parents), would dearly love to hear from you how it is done from the “inside”. You give us so much joy and hope each day, sweet one!

  6. This was painful to read. I try to rationalize having done this by recalling all the “experts” who told us there was no possibility of endangering Emma’s health and all the “scientific” reasoning as to how this would be helpful in allowing her brian to “heal”. Then we made more phone calls after the first treatments with doctors and researchers that scared the crap out of us. I’m glad Emma is so (characteristically) compassionate and forgiving of us, but it’s harder to forgive myself for this and all the other “cure” interventions we tried that seriously impacted Emma’s life, well being, happiness and her quality of life, like the torture of the casein-free, gluten-free diet.

    All I can say is that I’m so happy we can communicate with Emma now and she’s part of any decision-making regarding her life. It’s abundantly clear to me that she is so much more intelligent and insightful than I am and that she knows what’s best for her, even at her young age.

    Hey, we fucked up. In many ways. We’ll still fuck things up in the future, but hopefully never like this. Thankfully, the enormous energy and dogged perseverance we (more Ariane than I) demonstrated in attempting to cure Emma has been re-channeled into helping her communicate her profoundly wise and wonderful thoughts–and helping other parents of autistic children realize there is another path that leads to freedom.

  7. The candor and critical thinking with regards to the autism “treatments” you have tried in the past is extraordinarily refreshing. Thank you for putting Emma’s story out here and being honest about what you have done and what she is doing now. Every time she tells you to use her words in this blog my heart soars with adoration for her success in finding a method of communication which works for her.

  8. Thank you both for talking about this. There are so many other parents out there wading through misinformation and fear…we too have underestimated our son at times.
    The part that I feel the worst about is that I should have known better. I’m not just saying that; I truly should have – because everything he has proven he knows has been him spontaneously sharing with us.

  9. Dear Ariane, thank you so much for sharing. I’ve always felt so guilty I’hadn’t done anything such to ” help ” my son(he’s almost 32,on the severe end on the spectrum, non verbal with great learning difficulties).Fortunately, we didn’t have any Information on treatments like that when my son was diagnosed with severe autism. When we started hearing about treatments I thought we were not brave enough to try any.Your post made me feel relieved.

  10. I have never commented on your blog before, even though I have been a long time reader. I had to comment now, because of the tears in my eyes (not that your posts haven’t provoked tears before – these tears just somehow inspired me to write today). I am not crying because of the stem cell treatments – you were doing your best, out of love – but because I am so touched by the loving and wise person who lives in the twelve year old body named Emma. It’s wonderful that you have found ways in which her mature and beautiful soul can express itself. The work you have done and the expressions that come from Emma both give me hope for our world.

  11. “aww, sweetheart” exactly.

  12. Thank you for sharing this deeply personal experience so that others may learn. We have all made decisions with our kids that we wish we didn’t, out of the fear that society has created, and hopefully with our awakening we can help others to not fall into this trap. Blessings to you and Richard both 🙂

  13. I went back a few weeks ago, before life got crazy, and started at the beginning of the blog…wondering how far it went back, and curious to see how you and Emma grew and changed. I knew there would most likely be things that surprised me but I was curious anyway. I read thru the account of the complications of the first treatment, and Emma i believe truly hit the nail on the head with the desperation. Only desperation would leave someone returning for 2more after that…thinking that the benefits outweighed the risks. I don’t say this as it probably comes across, as a chastisement, more as sadness that I could have been that parent, and that so many autistic people are put through so many things by well intentioned but misinformed parents. Anger that the misinformation and the desperation are perpetuated, thankfulness that there is now another force at work to overturn it. Thankful that you and others share your mistakes so that I could learn, and one less parent is making them (well the huge ones anyway I’m sure I fail regularly). I sometimes wonder what Es life would be like had I not stumbled here, and if it hadn’t clicked, if I hadn’t ventured further…like you, I blog about my kids, and as you originally thought for yourself, only a handful actually read it…but who knows what the future will bring. I’m glad you didn’t scrub those parts from it…because it makes you a stronger voice…a stronger presence of look I’ve been there and this is where I am now. Well rambling train of thought as usual but I hope you understand what I’m trying to say. A special thank you to Emma for speaking out for herself, and for allowing her life to be less than private so that you can connect to the parents. I’m sure that E thanks you both too. 🙂

  14. Yours is an amazing journey, and I mean both of you. The transformations Emma has gone through to find her voice – or rather : be understood – must be mind blowing for any parent with a child on the spectrum. I know it is for me, although my son is verbal but I feel I can learn from any autistic’s journey in some way… But your journey as a parent, of both of you as parents, is equally as important for others to see. I understand it must be incredibly painful to talk about those times you were turning to ‘therapies’ of that kind, but it is SO IMPORTANT to read about your change of mind, your own progress and learning stages in context. For all children whose parents still wade in the fog of despair over an autism diagnosis…Emma&your story is like a bright light! X

  15. Thank you so much for sharing another aspect of stem cell treatment that I knew nothing about. I had no idea it was a possible treatment to “cure” autism. I’m sorry you all had to go through it.

    For me, stem cell transplant has not cured my definitely medical condition, but it has kicked the cancer into place for however long and I am in remission because of it. Treatments need to be appropriate to the ‘disease’. And as you so rightly say, autism is not a disease, just a different neurology. As the commenters above, I thank you for sharing what must be a very difficult issue for you. Thankfully Emma remains a strong intelligent autistic and fabulous young woman. Good luck to you all moving on. x

  16. Thank you for sharing everything you have learnt, Ariane and Emma. It is so greatly appreciated. I am an avid reader of your blog and it has helped my family immensely. We will always be grateful. I don’t normally comment, but had to say thanks. You both share so much with everyone and it is valued and respected 🙂

  17. I just went back through some posts from when you started this blog, and the difference is so striking. You have all learned so much and come so far. ((hugs)) x

  18. Chou Chou Scantlin

    One of my favorite sayings is, “Explain not. Your friends don’t need it, and your enemies won’t believe it”, but you have taught me much about the value of bravely sharing our experience in order to help others. I think I need to make a list of thoughts here, in order to share bravely. These are, of course, just my opinions, following no one else’s agenda.
    1. Parents do regrettable things as they make the hard choices to help. All do. Wise children understand and forgive. Wise parents accept and move on. Those who bravely share their mistakes in order to help others are generous humanitarians.
    2. No one has the right to torture or harm their children, but when are the parameters of parenting stepping over the line into torture? Is putting braces on your child’s teeth torture? Making them clean their room? Preventing them from eating foods that they are allergic to, even though they want it? Emma appears to be healthy and happy, but if that was not the case, and if the casein free/gluten free diet had helped an imflamned gut, as it has with some, would it be torture? If typing to communitate, or stencil board had not worked, would trying be torture?
    3. Because of this blog, I now have many incredible autistic friends, people I adore and respect, and most are strong advocates in the Neurodiversity Movement. It is an important civil rights movement that is thrilling to see unfold. That said, there are some things some say that I do not completely agree with. Until we know, no one has the right to say if autism is strictly genetic, or if other factors are involved in some cases. No, I do not think vaccines cause autism, and I do not support Autism Speaks. I choose not to boycott or protest, as it harms me, but that is just me. I am as deeply pacifist as I am autistic.
    4. I do not want to be “cured” of autism any more than I want to be cured of being left handed, female, caucasian, or sixty years old. None of these things are patholigical, and I am happy and at peace with who I am. I rather like it.
    5. I am a healthy autistic woman. I used to be sick, and getting healthy did not change the way I process the world, but anyone, autistic or not, functions better when healthy. I have tried many things, researching extensively, and only a few things have helped, but they have helped dramatically. Not because I am autistic, but I did have many of the commonly seen gut and immune problems oten associated with autism. I have treated those things in myself. They do not help everyone, but I am happy to share with others what has helped me. I did not enjoy illness ever. I do enjoy my autistic mind. I also has fun sharing silly harmless old wives cures at times. I am an old wife:) I abhor snake oil charletans, and profit driven agendas, though.
    6. Any person has a right to do what they think is best for them, but caregivers need to use extreme caution and respect in deciding on
    treatmants, therapies, medications, and living arrangements. You and Em
    are making such a great example of the importance of finding a way to

    communicate as a priority and presumming competance.
    I have written far too much. I know nothing. All I know is I was sick and now I am not, and I am as autistic as ever.
    As fir you, Em, and Richard…”Aww, Sweethearts!”

  19. Thank God I found you.

  20. Pingback: “Love Not Fear” | Emma's Hope Book

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  22. We are thinking and researching to have stem cell therapy for our 11 yrs old autistic son. We tried everything that we thought safe (Bio-medical, HBOT, ABA). Everyone (including his PCP, speech therapist and doctors in family) we talked to said Stem cell is going to be very big thing in few years but not now. There are not enough evidence yet. My wife, a medical graduate, asking all sorts of questions to doctors to find out cord blood vs bone marrow and she very adamant on pursuing it. Since he is still young and stem cell may work better when he is young, we don’t want wait 10 yrs from now. I told my wife and doctors, “I would not mind getting any result since the therapy is still in research phase BUT I DON’T want him to regress or have any negative side effects–only thing we lose is the money which I can live with.” Everyone say that there are no known side effect. Can anyone please tell us if there are any side effect or damage? This is my only concern.

    • We were told by a group of neurologists out of Harvard that possible side effects could include cancer, tumors, and a whole series of unknowns, but each one was frightening. I deeply regret having taken our daughter to have stem cell treatments. Deeply. I cannot emphasize that enough. Who knows what long term damage we may have done to her? We will never know. And if she ever does develop something horrible, I will not be able to say, the stem cell treatments had nothing to do with this. I don’t wish that on anyone’s conscience.

      If you are looking for something/someone to help your son, please go to Soma Mukhopadhyay’s website – http://www.halo-soma.org/about_soma_tito.php – and try to get your son to see her. Her method of helping people, like my daughter, communicate has changed our lives as well as hers. If I could do all of this over again, I would have gone to see Soma, instead of doing stem cell treatments.

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