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am a special education teacher and yet I dont believe I even asked. The clinic explained their method would help send stem cells into the body and that those cells would navigate to the most damaged parts of the body first. Then they would do their magic and continue for up to a year. This mothers experience is shocking because it actually matters greatly what kind of stem cells are used, how donor and recipient are matched, how the cells are examined and treated to ensure the right type and number are used, and where they are injected. They do not magically navigate to damaged parts of the body (and there is no reason to believe that people with autism have damage requiring repair). Lifelong impact If a stem cell transplant works, the cells effectively become part of the patients body and can have a lifelong impact for good, or for harm. Finally, although scientists are hopeful, it is not certain that cord blood can generate nerve stem cells 1 . As autism is a neurological disorder or difference, this would be necessary for a hypothetical stem cell treatment to work. There are also many known risks in the use of umbilical cord stem cells, particularly those that are from other people 2 . If a clinic denies this basic fact, one must worry about its other claims. I cannot comment on whether progress this mum says her child has experienced had any relationship to stem cell treatment, as she says that the family also made many other changes (including sending their son to a new specialist school and stopping two prescriptions for psychoactive medication). Children with autism learn and grow, just like other children, and it is hard to know which interventions are most helpful. Without medical testing, one cannot even know if her son received real stem cells or a sham treatment. Indeed, so questionable is the whole practice of stem cell therapy on children with autism one cannot say whether this mother, who Research Stemming the tide Stem cell research is without doubt one of the most exciting areas in medicine today but does it have anything to offer people with autism? You might think so if youve seen tabloid news stories and internet posts about parents desperate to get it for their child. In reality, stem cell research is still in its infancy. The few approved human treatments based on it are last-ditch, life- saving efforts, the best-known being bone-marrow transplantation for leukaemia. These procedures carry significant risks, especially if another persons (allogeneic) stem cells are used, instead of ones own (autologous) stem cells. So lets be clear: there is no approved stem cell treatment for autism. A very few small clinical Yet when it comes to helping people with autism, that is exactly what almost all families who have sought stem cell treatments have done. A mothers story Autism Eye made contact with one mother (who cannot be named for legal reasons) to hear at first-hand a parents experiences of stem cell therapy. Mum to a relatively high- functioning child with an autism spectrum diagnosis, she says she has twice brought him to a clinic in Panama for stem cell treatments. The clinic said her son would receive allogeneic stem cells derived from umbilical cord blood, and that there were no known risks to the process. She describes what she was told about the technique: The clinic did not address the causes of autism. I The clinic explained their method would help send stem cells into the body ... then they would do their magic The internet is awash with stories about stem cell treatments being the new big cure for autism. However, Dr Mitzi Waltz warns that there is a lack of research and for parents it could turn out to be a very costly con Science in its infancy: a stem cell, shown alongside a neuron encouraged to become the right kind of healthy cells. It isnt a case of simply extracting them from one part of a body and injecting them into another: stem cell therapies are complex, highly technical and crucially experimental and highly risky. This is not something you would want to trust to a clinician who works in a hotel room, your home or an unregulated overseas clinic. trials have recently been carried out, but even these have drawn strong criticism. They have even being accused of being covers for marketing unproven treatments. Their results cannot be relied upon. Exciting potential The potential of stem cells is exciting because they are undifferentiated. Theoretically, with the right stimulus, they can turn into any kind of specialised cells that the body needs: bone, skin, blood vessels, neural tissues and so on. They can be derived from bone marrow, umbilical cord blood, peripheral blood and human embryos, among other sources. In effective stem cell treatments, specially selected and treated stem cells are introduced to damaged tissues and carefully 30 www.autismeye.com Aut i sm| eye I ssue 13 2014 www.autismeye.com 31 Aut i sm| eye I ssue 13 2014 Research made contact via email, and her son are real people. Sadly, the costlier the con, the more elaborate the measures health fraudsters may use. These could range from writing fake reviews to concocting false profiles of happy patients, whose stories are shared through mailing lists, internet forums and social media. The stories serve as unverifiable but compelling marketing tools. What I can say is that the clinic she said she took her son to moved to Panama from neighbouring Costa Rica around three years ago, after the Costa Rican Health Ministry decided there was no evidence that the treatments it advertised worked or were safe 3 . Stem cell cautions Paul Knoepfler, associate professor in the Department of Cell Biology and Human Anatomy at the REFERENCES 1 EuroStemCell (2012): Cord blood stem cells: Current uses and future challenges. Online at: www.eurostemcell.org/factsheet/cord-blood-stem-cells-current-uses-and-future-challenges 2 National Cord Blood Program (2013): Comparison between bone marrow or peripheral blood stem cells and cord blood donated for transplantation. Online at: www.nationalcordbloodprogram.org/qa/comparison.html 3 Leslie Joseph (2010): Costa Rica puts brakes on popular stem cell tourism, Reuters, 7 June. Online at: http://in.reuters.com/article/2010/06/07/idINIndia-49088520100607 I see stem cell clinics with a shocking level of naivety about autism spectrum disorder, including viewing it as one simple type of condition University of California, Davis School of Medicine, is a world- renowned stem cell expert. He sums up the situation clearly: There is no solid science to back up this as a way to help your child or patient. To be more blunt, if you go this route, the child quite literally becomes the subject of a for-profit experiment. Knoepfler adds that clinics selling stem cell treatments generally lack training or expertise in autism or stem cells. When used by relatively untrained providers in a for-profit setting, there are a number of risks, including cancer, infection, pulmonary embolism (blood clots in the lung, where intravenously injected stem cells tend to get filtered out), and immune reactions, just to name a few. Stem cell clinics tend not to do proper follow-up on patients as well, which boosts risks, he notes, especially if you travel overseas. I see stem cell clinics with a shocking level of naivety about autism spectrum disorder, including viewing it as one simple type of condition, Knoepfler says. Slick, professional websites, promotional brochures and marketing campaigns have been produced by companies that see stem cells as a lure for desperate patients. However, making your business look good is not the same as giving medically and ethically sound advice and treatment. Patients with conditions ranging from Lou Gehrigs disease to spinal cord injury have succumbed to some very accomplished con men, parting with huge sums of money for treatments that were either elaborate shams, or dangerous. Parents need to be sure that their autistic child is not just a new target for these cynical, serial perpetrators. New science: cameras mark the arrival of stem cells in Granada, Spain RESOURCES Parents may wish to view the TV series 60 Minutes story Stem Cell Fraud: www.youtube.com/ watch?v=ovPZkQYee8Y For factual information, see EuroStemCells information centre: www.eurostemcell.org/ stem-cell-resources The Royal School for Deaf Children Margate caters for children who have hearing impairment and additional needs including emotional, behavioural or medical problems. We can also meet the needs of children with communication difculties. Our farm offers a range of programmes, work experience and apprenticeship placements.
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f a r m FOR YOUNG PEOPLE WITH COMMUNICATION AND LEARNING DIFFICULTIES The Royal School for Deaf Children Margate & Westgate College Victoria Rd, Margate, Kent CT9 1NB. Telephone/Textphone: 01843 227561 SMS: 07797 800015 Fax: 01843 227637 School email: enquiries@royalschoolfordeaf.kent.sch.uk Website: www.townsendtrust.org Part of The John Townsend Trust Pengwern College is an independent specialist College for young people aged 16 -25 with moderate to severe learning difficulties who are learning new skills for the next stage of their life. Set in the beautiful North Wales country side, Pengwern provides high quality education, care and specialist support. Call 01745 592 300 or email us at pengwern.college@mencap.org.uk to book a space at one of our monthly open days. www.pengwerncollege.ac.uk Pengwernc /CollegePengwern