Why I do not believe in stem cells for autism today

There is a critical need for treatments for children with autism. 2020 update: see this more recent post on my thinking on stem cells for autism.

autism stem cells trial
Autism stem cells trial made news in the Sac Bee.

About a year ago I wrote about a clinical trial at Sutter Health in Sacramento that was approved by the FDA for stem cells for autism.

At that time I was relatively less concerned about the trial. Over time, as I’ve learned more, I’ve gotten quite worried about it, a concern I discuss in my new book on stem cells.

My concern has been amplified by the sharp increase in the number of parents contacting me with questions as they are considering getting stem cell “treatments” for their autistic children. Some of the clinics offering such treatments are right here in the US, while others are in foreign countries. I believe that hundreds, perhaps even thousands of autistic children are being infused with stem cells around the world each year.

I just don’t see how such an approach would be successful. I’ve become concerned the Sutter trial is being used indirectly (through no fault of those doing the trial itself) by the sketchy for-profit clinics selling snake oil stem cell cures for autism. Some parents have mentioned the Sutter trial as a rationale for getting their kids stem cell transplants from clinics.

For another, extremely helpful view of this trial and great background see this piece by Emily Willingham. This passage from her article especially resonated with me:

“What we have is a few studies suggesting an autism–immunity link, although not all findings support one [paywall], some partial effectiveness of cord blood cell infusion for cerebral palsy, and no data regarding what effect, if any, a cord blood infusion would have in autism. The rationale for the work appears to be the CP trials and Patterson’s work with a mouse model of inflammation.

By Patterson she is referring to Caltech neurobiologist Paul Patterson.

The families with children who have autism that contact me almost weekly now have 2 main questions that they ask me:

“Should we get a stem cell treatment for our son (or daughter)?”

“What specific clinic do you recommend?”

I find myself in the difficult position of telling them gently that I do not believe in treating autism currently with stem cells. I briefly tell them why. I explain that there is hope for the future in this area, but we are many years if not decades away.

The reactions range from appreciation for my honest opinion to anger over my skepticism. I understand.

So why don’t I believe in stem cell therapies for autism today?

Basically, there is no convincing data to support the idea.

Let me preface my deeper explanation by saying again that some day stem cells may help autism, but that day is not today and I strongly doubt it’ll be in less than a decade. Willingham is even more skeptical and in an excellent piece last month listed stem cells as one of the top 5 scariest autism interventions. She says bluntly, “There’s not a strong rationale for using stem cells as therapy for autism…”

On the other hand using stem cells such as induced pluripotent stem cells (iPSCs) to study autism, for example by examining a patient’s neurons made from their own iPSCs), to try to better understand the disease has great potential. Still that is very basic even if clinically relevant science meaning that treatments based on such research would be far down the road. Parents of autistic kids do not feel they have time to wait. I understand that.

The biggest problem stem cell treatment wise for autism is that even autism experts do not know what causes this spectrum of disorders. If you don’t know what causes a disease it is awfully tough to treat it with much hope. Most autism experts believe there are multiple, perhaps even diverse causes to autism spectrum disorders, which complicates treatment even further.

What this all means is that doctors and clinics promoting stem cell-based “treatments” for autism today have very little in the way of evidence and frankly sometimes no evidence at all that the treatments will work.

The main rationale given by proponents of stem cells for autism to support the use of stem cells in treating this disease is based on the unproven idea that autism is an autoimmune disease and that stem cell interventions will calm down the immune system. The most prevalent stem cell intervention for autism is IV injection of stem cells into the blood stream through a vein in the arm.

Absent any real data, this is essentially a long shot, a shot in the dark. And the stem cells given to the children have risks that we do not entirely understand today. Further, those risks may last a lifetime since stem cells, unlike traditional chemical medicines, are alive.

Therefore, in the end, I strongly recommend against getting any stem cell “therapy” for autism from a clinic.

Even clinical trials (see list here) for autism using stem cells will have risks and are likely long shots to work as well. However, at least in that context your child has a relatively greater chance of being treated by trained physicians, followed up on carefully, and not be exploited for profit. In addition, you and your child may contribute to helping future generations of autistic children through the knowledge gained from the trial.

The bottom line is that I urge parents to use great caution when considering stem cell interventions for autism or other childhood neurological disorders such as cerebral palsy.

7 thoughts on “Why I do not believe in stem cells for autism today”

  1. Pingback: Why I do not believe in stem cells for autism t...

  2. I particularly like the comment on the homepage that says “LSG’s mission is to create a solid comprehensive approach to the treatment and maintenance of diseases and to break free from the medical insurance world by tapping into an affordable private- pay sector delivering exceptional healthcare free from the medical insurance maze.”

    In other words, pay us directly because medical insurance will not pay for this unproven so called “treatment.” I.e.- if you are willing to pay, we are willing to give you the miracle cure.

    Also, for one of the physicians, it says he graduated from the “American University School of Medicine;” There is no American University School of Medicine- there is an American University of the Caribbean School of Medicine.

    Spin Doctors working overtime.

  3. intheknowstemcells

    Mr. Vanden Bosch – Now that you have been appointed “Chief Medical Stem Cell Specialist” at Life Stem Genetics (LIFS), would you care to answer my questions? Also, what exactly qualifies you to train physicians, clinicians and nursing staff? From the information I can find, you hold neither an MD nor a PhD in any field of science; not even a master’s degree. From reading the company’s Edgar filings, I see that your CEO, Gloria Simov is a certified dental technician and “…worked in a highly regarded plastic surgery clinic in Beverly Hills” and “…worked in the premiere dental office of Dr. Anthony Mobasser in Beverly Hills” Perhaps I am missing how she is qualified to be the CEO of a stem cell company that intends to open “140 affiliate and corporate locations operating within five years”? http://www.modelmayhem.com/542733 Hmmmm….


  4. Intheknowstemcells

    Mr. Vanden Bosch, could you please comment about the apparent “pump and dump” of Life Stem Genetics LIFS stock recently? I know the SEC has been notified by several people and I see that you are one of their corporate advisers. Management does not respond to telephone or email inquiries.

  5. I back up Jennifer about testimonies out there. This article is too vague into what treatments were performed and all the stem cells that are used in these procedures. Can you retract the article and answer these dangers and efficacy from umbilical, fetal, iPSC, cord, and adipose. To date all these, with the exception of autologous adipose stem cells, carry a low percentage of healing and puts the patients into harms way with the possibility of formations of teratomas. Most of the research and data is coming from University centers and not in the population out there. I can say without pause that what our team is doing in the medical clinic is proving validity in that autologous adipose stem cells with activated growth factors are making differences. University and medical research must continue in creating a blue print for medical personnel to use as a standard in treating patients. And yes, it is true that we are doing it here in the US. I have seen countless patients achieve a better quality of life and children being moved out of special schools and into mainstream schooling with the help of stem cell treatments. It is time to get away from the ol’ saying “it may take decades” to find out what works–kind of like it takes 7-10 years to make a drug and carry it to market. Do you know how many drugs that are out there being used “off-label.” It is time to get back to allowing certified doctors in Regenerative Medicine work their trade as doctors. Enough of the regulations made by politicians who have spent zero time in being proficient with the needed knowledge and education of medicine to make such a choice on their own–additionally without the pharmaceuticals lengthy time held by political red tape. Grants can be given to the true pioneers of the medical industry. This article reminds me of an NIH clinical trial of 17 patients receiving Platelet Rich Plasma vs. Normal Saline for the treatment of “tennis elbow.” At the end of the trial the US government found that PRP was no more affective than saline in that treatment. Are you kidding me? Thanks to the Dutch 2010 clinical trial actually performed a real double blind study of PRP vs. Corticoid steroid, the known acute treatment for tennis elbow in orthopedics. At the end of that year, the patients who received PRP (1 treatment) vs. those that had multiple steroid treatments throughout the year still showed PRP treated patients had a success rate higher than 82% of becoming asymptomatic. We are in a real crisis with the baby boomer generation aging and needing quality of normal daily living. Autologous adipose stem cells HAVE shown healing properties for orthopedic, autoimmune, cardiac, pulmonary, and neurological diseases and injuries. Just ask a hand full of the thousands already treated by our team. I thank you for your research and look forward to your new book.

  6. Paul, I agree with you. I believe there needs to be more work done on the root causes. These are complicated by the fact this a spectrum condition with sex related differences. That said, I will soon be featuring the work of Dr. Valerie Hu on one of my Blogs: “News behind the Neuroscience News”. She is unraveling some of these complexities. You can learn more by watching her You Tube Video: http://neuromics.net/valerie-hu-and-the-biology-of-autism/

  7. There is patient testimony out there. Ken Kelly is a prime example of MAJOR quality of life improvements with adult stem cell treatment XXXXX

    (Note, XXXXX = edited for content not permitted via comment policy)

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