Beginner’s Guide – How?
- CALL TO ACTION: MENDIP HOUSE RESIDENTIAL CARE HOME ABUSE SCANDAL
- Treating Autism statement re Mendip House scandal, NAS-run care home for adults with severe autism
- Identifying health problems in autism 1 December, London. CPD educational event for parents and professionals.
- Autism Research Should Be Financed Like Venture Capital
- London Support Group Meeting 18 October
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Many of our members, as well as numerous parents, clinicians and researchers throughout the world, have found that treating biomedical problems in children and adults with autism can lead to an improvement in a wide range of symptoms, including sleep, irritability, aggression, self-stimulatory, repetitive and obsessive behaviours. Some have seen improvements in the core symptoms of autism, speech and communication, sociability and imagination. A few parents have reported that treatment of comorbid medical conditions has brought about in their children a complete recovery from autism.
As recent research increasingly shows that autism is not a homogeneous condition, it is not surprising that NO SINGLE APPROACH IS RIGHT FOR EVERY CHILD. The suggestions given below are based on the situation of the majority of our members, who are parents of children with autism; however, they are equally relevant to adults with autism. These suggestions do not constitute medical advice – please remember it is always important to seek appropriate medical advice before initiating any medical treatment.
Assessing the Situation
If treatments are to be successful, you must take some time to figure out (a) which ones might be best suited for your child, and (b) how you will decide which treatments are working. Choosing a medical practitioner, starting a treatment diary, and using an assessment tool such as the ATEC can all help.
Find a Practitioner
Practitioners recommended by our members include medical doctors, nutritionists, homeopaths and other alternative therapists. We suggest parents find a knowledgeable and sympathetic medical practitioner, with experience in treating the health problems of children on the autistic spectrum. Such practitioners will assess your child’s presenting symptoms and help investigate underlying causes with a range of testing options. They give guidance and impart knowledge based on clinical experience, and generally help parents to treat their children safely and with greater efficacy. Many parents treating their children work with one or sometimes even more practitioners. Please contact us for an up to date list of practitioners.
Keep a Diary
Other than enlisting medical help, the single most important method of selecting treatments and assessing their efficacy is to keep a log or diary. It is best to start this diary before you begin treatments, although it is never too late to begin this highly useful habit. Whenever you start your diary, choose topics and a format that will suit your child and your personal time constraints and preferences. Below are some ideas that may help:
• You may prefer to keep a diary on-line, in the form of a blog that is not viewed by any others. On MSN they are called “spaces”; on AOL they are called “journals.”
• You may prefer a handwritten notebook. Some people have found that using different coloured ink can be of help. For example, write negative things in red, positive in blue. That way, a quick glance back can tell you what kind of day it was overall.
• Some people prefer photocopied templates, with different sections: communication, behaviour, food, bowel habit, supplements taken, sleep, or whatever applies to your child. You may employ a rating system for appropriate sections such as energy levels and stimming, etc., perhaps rating behaviour on a scale of 1 to 5. The number 1 would indicate very problematic (for example, very lethargic or very stimmy) and 5 would indicate excellent day (full of energy or virtually no stimming all day). Other parents use codes to simplify the process. For example, when referring to daily bowel habit/movements, P=pale, B=brown, D=diarrhoea, S=soft, F=formed. So, a single diary entry might be PD X 3, PS X 1.
• Ask yourself about the issues that appear most significant for your child. Does your child crave/exclude certain foods? Engage in certain unusual behaviours (chewing shirts or licking non-food items, for example). Have noticeable physical symptoms like red ears, rashes, eczema, pushing on the gut, very dry hair, excessive ear wax, white tongue, spinning, unexplained laughing, irregular bowel movements, etc? Have erratic or abnormal sleep patterns? Have sensory issues (covering ears for example)?
Often, speaking with other adults who are involved in your child’s life will help you to remember or notice things that might otherwise be overlooked. By documenting as much about your child as possible, you will eventually find patterns that will help you make sound decisions about treatment. This information will also help any practitioner you choose to work with.
Use the ATEC
The ATEC is a common method used to keep track of improvements over long periods of time. ATEC stands for Autism Treatment Evaluation Checklist and was developed by the Autism Research Institute. It is a bit of a blunt instrument, but often parents find it helpful to complete the ATEC prior to beginning a major treatment. Other parents use it more as a way of periodically evaluating overall progress. It is free and easy to use. You can complete the ATEC (found here) and submit it for scoring. It is helpful to make a few notes for yourself on the first ATEC so that you answer questions consistently each time you complete the form. For example, if your child is very young you may not consider the lack of toilet training to be a real issue. It can also be helpful to have someone else, like a teacher or family friend, complete a series of ATECs over time, to see how they perceive the changes in your child. Remember that with the ATEC, the lower the score, the better. Be sure to keep your scored ATEC sheets.
Start Gathering Information and Support
Treating your child’s autism-related problems will take knowledge, expert advice and support. Below you will find some recommendations for gathering information and support from different sources.
Facebook and other discussion groups are a wonderful resource for sharing experiences and learning. We may be biased, but we believe the Treating Autism Facebook Page is the best place to start! You can also follow us on Twitter @tweetingautism for news and updates.
When you first join a group, it may seem as if everybody is chatting in some sort of code. There will be many terms you might not understand and lots of abbreviations used. You can download a list of abbreviations from the Useful Documents section very soon which will help you with many of the most commonly used acronyms. The terminology will become familiar to you over time. Sometimes it is helpful to simply use a search engine like Google to read about a term you are unfamiliar with. Other times, you may want to use the search engine within the Yahoo group to find out more about the term.
Support groups, events and parents’ conferences are another excellent way to gather information and support. Treating Autism support group contacts and information can be found by contacting us. Conferences can provide you with information and inspiration to continue your journey. Contact us or join as a member to be informed of Treating Autism events in your local area (or check our Events page for dates and places of our half-day Roadshow events and larger conferences).
An excellent way to find information about treatments is to use websites. Websites are created by both parents and professionals. Anyone can create a website and it is important to know about who is behind the work before you start to trust the information you might find there. Some websites for beginners are listed below. Please see our links section for a more complete list.
There have been many books published in the last few years addressing treatments for autism. There are, obviously, many more resources than those listed here. Members of our Charity have access to the Treating Autism library, which includes many books on autism, from scientific reference books to personal stories. Members receive a copy of the list of Library Books available as part of their Membership Pack. For the price of postage, you can borrow these books to read them before deciding if you would like to purchase them yourself.
Members of Treating Autism also receive reviews of many of these books, written by parents like yourself.
A must-read for any autism parent is ‘The Autism Revolution’, a ground-breaking book by Harvard Medical School researcher and clinician Dr Martha Herbert. It is an easy-to-read book, in which she rejects the model of autism as a lifelong, genetic, brain disorder, and instead provides compelling evidence drawn from her own clinical experience for a paradigm shift towards autism as a whole-body disorder. ‘Autism Revolution’ is a positive, inspiring book, with lots of practical advice on restoring health and improving quality of life.
Another book recommended by our members that provides a more in-depth and comprehensive view on various medical issues comorbid to, or underlying autism, and possible test and treatments is ‘Navigating the Medical Maze with Autism Spectrum Disorder – A Practical Guide for Parents’ by Sue Ming, MD and Beth Pletcher, MD. This book is also available to borrow from our members’ library.
Extensive information on autism treatment approaches can be gathered by watching Autism Research Institute conference videos. Another website with excellent video presentations and information on various treatments is http://www.autismcanada.org/
Basic information for parents just starting is also available on the Talking About Curing Autism (TACA) website.
When reading on websites, take the time to navigate around a bit and familiarise yourself with what information is available; however, realise that it is often best to choose one topic at a time to investigate. For example, diets. There is so much information that trying to absorb the details of each topic simultaneously may be difficult.
For a scientific analysis of the latest autism research, do consider reading our free publication Medical Comorbidities in Autism Spectrum Disorder. This document references numerous recent studies which show that some autism symptoms can be ameliorated or reduced with accurate diagnosis and treatment of related health conditions. A hard copy of the document can be ordered by email via firstname.lastname@example.org
For an easy-to-do and relatively inexpensive-to-learn method of improving the social connectedness and playfulness of your child and your relationship with them read our free publication on Intensive Interaction.
Enzymes for Autism and Other Neurological Conditions: The Practical Guide for Digestive Enzymes, Better Health and Better Behavior by Karen DeFelice, is an good and easy-to read resource for beginners, or anyone interested in improving their ASD child’s gastrointestinal health and behaviour.
Changing the Course of Autism, by Dr Bryan Jepson
The Myth of Autism, by Dr Micheal Goldberg
Healing the New Childhood Epidemics, by Dr Kenneth Bock
Autism: Effective Biomedical Treatments – Individuality in an Epidemic, by Jon Pangborn PhD and Dr Sidney Baker MD
Special Diets for Special Kids, by Lisa Lewis
Treating Autism: Parent stories of Hope & Success, by Dr Steve Edelson
(most of these book titles are available to borrow for free from Treating Autism members library)
Treating Autism youtube channel videos are HIGHLY RECOMMENDED for both beginners and those further in their autism journey. Many of our videos are by parent presenters, and talks by professional practitioners are presented in a simple and easy to follow manner, so suitable for complete beginners just starting out!
Visit our channel and watch our videos by copying and pasting www.youtube.com/user/TreatingAutism.
Clean up the Diet
There are a number of diets or dietary interventions that, according to numerous anecdotal reports, can be helpful for ASD children. Often, these diets restrict certain components of food. For example, the Specific Carbohydrate Diet (SCD) restricts the types of carbohydrates a child may eat. The gluten-free, casein-free diet (GFCF) does not allow for the proteins found in many grains (wheat, rye, etc) and dairy.
There are many other options for diet; however, the main focus of any good diet should be to remove substances that may be detrimental and to increase healthful, nutritious foods that can help the body heal and grow. Perhaps the best book to provide information about each of the popular diets is Julie Matthew’s Nourishing Hope. This book is also a good resource for information on cleaning up the home environment. www.nourishinghope.com Nourishing Hope covers some of the science behind various interventions, the main autism diets, and many of the basic treatments. The website also offers a great deal of information to anyone pursuing dietary interventions for their child.
While informing yourself of dietary options and making the decision as to which one(s) might be best for your child and your family situation you might want to consider taking some dietary steps that can be beneficial for anyone, regardless of specific individual needs:
Reduce the amount of sugar in the diet. It feeds bad bacteria and yeast which in turn have been associated with negative behaviours such as aggression, hyperactivity, poor sleep patterns, soiling, and smearing. Often reducing sugar means replacing foods entirely. Many prepared foods are filled with “invisible” sugar. Learn to read labels carefully if you buy prepared foods, and look for some of the more common names that mean sugar: corn syrup, glucose, maltose, fructose, fruit juice concentrate, dehydrated cane juice, dextrose or dextrin, or anything with syrup as a part of the ingredient. If you make your own food, you can control amounts of sugar much easier. Often people will reduce sugar amounts, replace white sugar with raw honey, and add spices such as cinnamon to provide more flavour.
Aspartame (NutraSweet, Equal). Aspartame is considered by many to be a neurotoxin and a common suspected cause of hyperactivity, aggression, and impulsive behaviour. It is important to note that many prepared products that boast of low sugar may contain aspartame.
MSG (Monosodium Glutamate). MSG is a excitotoxin which is also a suspected cause of hyperactivity in some cases. See www.msgtruth.org/avoid.htm for a list of foods that commonly contain MSG.
Reduce and aim to remove artificial colours, flavours, and preservatives. “Artificials” like these are not nutritious, and are a common suspected cause of negative behaviours, attention deficit, and hyperactivity.
Fluoride toothpaste can be replaced with a non-fluoride, SLS-free (Sodium Lauryl Sulphate) toothpaste. Fluoride is a suspected neurotoxin and SLS is a caustic detergent.
Organic foods. Buying organic can be costly but recent studies have highlighted the positive impact on children an organic diet makes.
Information provided by the American-based Environmental Working Group about buying organic www.foodnews.org/index.php can help you make informed decisions about the fruits and vegetables that are most important to buy organic. Washing fruit and vegetables well can help, as can peeling (you will lose important nutrition though); however, it is best to buy organic as much as possible. In the UK, there are a number of excellent organic farmers who will often deliver products such as meat, fruit, vegetables, and dairy right to your door at very reasonable prices.
Remove all trans fats and hydrogenated fats. Trans fatty acids, or trans fats as they are more commonly known, have been much in the news lately, and are now commonly accepted as very detrimental to health. In particular, trans fatty acids fill the omega fatty acid receptors in the brain, starving our children’s brains and possibly causing damage in the long term. Trans fats include hydrogenated oils, partially hydrogenated oils, margarine, industrial deep fried foods, and very often peanut butter (not the natural peanut butter) and mayonnaise.
Clean up the Environment
Reducing the number of toxic substances in the home is a positive move for the entire family. Toxins are all around us; unfortunately we can’t avoid them all, but we can make an impact by limiting known exposures.
The Environmental Working Group has help for parents trying to “green” their environment: Below we have listed some areas you may want to investigate further.
Water can contain chlorine, which can destroy beneficial bacteria in the gut, as well as causing other health issues. Water can also contain lead, copper and other heavy metals from pipes, solder points, or the supply itself. Carbon filtration systems can remove some of these contaminants.
Some people choose to install Reverse Osmosis Filtration Systems. It is important to teach children how to swim; however, if your child swims in a chlorine pool, you may choose to give your child Epsom salt baths after each session. To read more about this issue, see the Epsom Salts section under Interventions.
Your garden may contain pressure treated fencing or some bark chippings, both of which may contain considerable amounts of arsenic.
Some hosepipes contain lead to help keep the plastic supple. Always run the hose into a drain before using on the garden to remove any water sitting for extended periods in the pipe. There are no safe levels of lead. You can find some general information on lead here.
Mattresses, carpets, and soft furnishings can contain antimony and arsenic. Both are toxic heavy metals used as fire retardants. Some parents choose to remove most carpeting and buy organic mattresses. Children’s pyjamas also contain fire retardant and are therefore a possible source of toxicity. Washing the pyjamas six times in washing soda can remove most of it. Some parents choose to use long underwear instead of pyjamas and avoid the problem altogether.
Cleaning materials often contain toxic chemicals.
Cooking pans and crockery can pose dangers. Teflon can emit toxic fumes. Aluminium, nickel, and copper pans can leech toxic metals into food. Many people test their stainless steel cookware with a magnet. If the magnet sticks, the nickel levels will be quite low, and this is desirable. Many parents also use brands such as Le Creuset and Chasseur, or glassware such as Visions, as safe alternatives. Lead is used in some glazes for crockery. Be sure to verify carefully with the manufacturer in regard to lead.
Old paintwork, including previously painted but stripped wood, can contain lead. European countries generally have very high levels of lead in the environment. The following is a good introduction to the dangers of lead found in common household items such as children’s toys, necklaces, and lunchboxes, and also in the soil in your back yard and the dust in your windowsills.
Dental work can pose hazards. You may wish to ensure your child does not have any amalgam, ‘silver’, fillings placed. White composites can be used if necessary. Silver fillings are made with mercury and other toxic metals. Recently US researchers acknowledged the potentially harmful health consequences stemming from the use of mercury in amalgam fillings. Many researchers and parents also question the efficacy and safety of fluoride treatments. This list is in no way exhaustive. There is a great deal of information on the internet. Be sure to evaluate the source of any information you may find. One parent in the autism community, Dana, has compiled information on sources of toxic heavy metals www.danasview.net/metals.htm. There are many helpful websites when it comes to sources of toxicity in your home. This one from Canada may be a good place to start http://www.toxicnation.ca/.