Autism is a complex developmental disorder traditionally defined by a core triad of impairments, relating to communication, socialisation and behaviour. Children who are affected have communication and socialization difficulties, as well as restricted and repetitive interests and behaviours. It is important to note that all children with autism also have sensory dysfunction.
- Autistic disorder
- Asperger syndrome
- Pervasive developmental disorders (PDD)
- Unspecified, but collectively referred to as Autism Spectrum Disorders (ASDs)
Definition and causes
Autism is a behaviourally defined developmental disorder which appears to be caused in early development by the impact of the environment on a genetic predisposition. Autism is treatable, and early medical/biomedical and behavioural/therapeutic intervention greatly improves the outcomes of children with ASDs. Usually diagnosed before the age of three, a pattern of initial seemingly normal development, followed by a regression or loss of skills around 18 months, is common.
Very few children with autism have a history of autism in their families. A widely accepted hypothesis is that there is no one particular cause for autism, but rather a genetic predisposition to many things, including depression, alcoholism, OCD, etc. These genes interact with the environment, which may include metals, viruses, antibiotics, toxins and other factors, which result in insult or injury to the gut/brain axis.
Who gets it and who is at risk?
The prevalence of autism is currently one in 86 children. Typically it affects more boys than girls and knows no socio-economic or ethnic boundaries. Twin studies show a concordance of more than 80% in identical twins and a rate of 38% in fraternal twins, similar to that of normal siblings.
At present there is no laboratory test that can detect the presence of autism. It is essentially a diagnosis made through clinical observation by trained professionals, unlike most of the following co-existing disorders.
Autistic Spectrum disorder can co-exist with other well-known disorders such as:
- Congenital rubella syndrome: an infectious disease acquired from the mother during pregnancy
- Down Syndrome
- Neurofibromatosis: a condition in which there are tumours of the nervous tissue
- Tuberous sclerosis: an inherited disease of the nervous system and skin
- Fragile X syndrome: an abnormality of the X-chromosome that can cause mental deficiency
- Phenylketonuria (PKU): an inherited metabolic disorder
ASD can however exist with any disorder. Common eo-morbidity also includes:
- Anxiety Disorder
- Obsessive Compulsive Disorder and Attention Deficit Disorder
- Childhood Disintegrative Disorder: where autistic symptoms develop after the age of three
- Rett’s Disorder: presents primarily in girls, can be detected by a blood test and is characterized by a deceleration in head growth and loss of purposeful hand skills and mobility. (The girls however almost always prefer people to objects.)
Checklist for early warning signs of ASD in young children
Early diagnosis and identification of a child at risk is of the utmost importance. To do this, we need to evaluate the emotional and social coordination/regulation in a young child, along with regular developmental assessments done by a paediatrician. In a very young child we need to be aware of behaviours that are NOT present.
- Does the child respond consistently to the calling of his/her name? Call the child by name, without giving any instruction, while he/she is engaged in an activity. Do this twice during the consultation to determine consistency. A response would be indicated if the child looks towards the caller. Note: the calling must be done by a stranger, and not a parent, to ensure that the response is to his/her name and not to the recognition of a familiar voice.
- Does the child show shared attention and read gestures? Point to an object across the room, and observe whether the child follows your gesture, e.g. point to a toy while saying, “Look at that [toy] on the bookshelf.” Ask the child to point to something other than an object they may find desirable, e.g. “Show me your nose”, or “Where’s the light?” The child should be able to do both.
- Does the child show expectation/anticipation during brief pauses in play? Play a peek-a-boo-type game with the child (e.g. hide your face, reappear unexpectedly and then repeat this action). The child should show facial signs of anticipation.
- Does the child reference the parent’s face for reassurance? Pick the child up during the consultation and observe his/her reaction. The child should look at the parent for help/reassurance.
- Does the child exhibit basic imitation skills? Say, “try this” and then perform a basic action, such as clapping your hands or putting your hands on your head. The child should attempt to copy your actions immediately.
- Can the child answer social questions? Ask the child social questions such as “What is your name?” or “How old are you?” The response should not be reliant on verbal ability, but can include a show of fingers or a partial verbal response. If the child is unable to give a positive response to at least five of these questions, further investigation by a professional trained to diagnose ASD, such as a psychologist or psychiatrist, is necessary. Averted gaze, absence of a social smile, resistance to social engagement, sensory problems (which may be indicated by fussy eating, sensitivity to noise, arching of the body and difficulties with potty training), and language delays are further indications of an increased risk of ASD.
Signs and symptoms
In an older child we become increasingly aware of symptoms, and soon we are able to observe which behaviours ARE present!
Symptoms are varied amongst children and may include:
- Seeming lack of attachment to parents or other family members. The child seems to prefer to play alone and has an aloof manner.
- Demonstrates inappropriate social interaction or withdrawal and fails to form normal relationships.
- Apparent lack of awareness of, or indifference to other people’s feelings
- Lack of awareness of boundaries, and often lack of response to being reprimanded (over time)
Language and Communication
- A young child with autism may appear to be deaf and parents often have the child’s hearing tested.
- The child often skips the babbling stage, and starts to speak later than other children of the same age, or doesn’t develop speech at all. A young child will pull one by the hand to get a desired object, instead of using verbal communication.
- The child has no use or understanding of non-verbal communication and gestures, e.g. does not wave ‘bye bye’.
- The child often uses repetitive sounds, and if speech develops, it might be immature or unusual like combining single words into a giant word like “areyouhungry”.
- He/she could lose a previously existing ability to utter words or sentences.
- The child’s rate, pitch, tone or rhythm of speech is abnormal; he/she may use a sing-song or monotonous voice.
- He/she finds it difficult to initiate or maintain a conversation.
- He/she can't understand or imitate speech or gestures.
- He/she responds inappropriately to sounds (covers ears).
- There may be meaningless repetition of words or phrases. The child may echo what someone says, or often scripts from a TV programme, or someone else’s speech (echolalia).
- In a verbal child there might be pronoun reversal.
- The child could present with apraxia (inability to plan words – absence of speech).
- Performs bizarre or repetitive movements such as rocking, hand twisting, finger twiddling, head banging, arm flapping, walking on tip-toe, staring.
- Develops specific compulsive routines or rituals.
- Becomes distressed or enraged by minor changes in the environment or in disruption of routines or rituals.
- Engages in self-destructive behaviour, such as head-banging or biting.
- Hyperactivity or lethargy
- Preoccupation with or attachment to objects or one object; may become fascinated by unusual objects or parts of an object, such as the spinning wheels of a toy car.
- Screaming fits
- Unable to engage in fantasy or imaginative play such as role-playing and storytelling
- Resists being held and cuddled; may scream to be put down; may have to be HELD on the hip (back arching off slightly). Over or under-reaction to sensory stimuli.
- He/she might respond inappropriately in situations, e.g. laugh when scolded or hurt.
- Over or under-reaction to sensory stimuli, including avoidance of certain foods, dislike of haircuts or nail cutting, high pain threshold, eat normally non edible substances, etc.
Other commonly noted symptoms:
- Inappropriate laughter (often at night)
- Night time waking
- Slurred articulation
- Unstable gait
- Low muscle tone
- Fixed or averted gaze
- Dilated pupils
It is interesting to note the following things many of these children have in common:
- A love for vehicular toys
- Removing DVD covers from DVD boxes
- Running off in one direction on the beach
- A dislike of shopping centres and the need to be “trolley bound”
- Rewinding favourite parts of their favourite movies for hours and preferring the credits to the actual movie (often resisting a new movie)
- No delay in motor milestones. They are generally quite agile.
- A “very good memory”
Autism is treatable by means of a synergistic or multi-disciplinary, child specific approach.
Autism specific therapies might include Applied Behaviour Analysis, Relationship Development Intervention, Floortime (DIR), TEACCH, Son-Rise and others. It is of the utmost importance that a child-specific approach is used and child-specific deficits addressed.
A rehabilitation programme will usually include:
- Occupational Therapy (sensory integration)
- Speech Therapy
- Other: Auditory Integration Training, Listening Programmes, Primal Reflex Therapy, HANDLE therapy, Braingym, etc.
Medication tends to be used in South Africa to treat specific behaviours related to autism such as hyperactivity. It is not used to treat autism per se.
It has been observed that there is significant improvement in children who are treated biomedically. See DAN (Defeat Autism Now) and Autism Research Institute: www.autism.com
Most children demonstrate an improvement when dietary restrictions are implemented to determine harmful foods. The Baseline Diet is a short (four to six week) trial period where one removes all possible offenders and reintroduces them, one at a time. A reaction to any food will be easily observed when the procedure is properly followed and implemented.
Most research/ information about diet and autism is based on the possible “negative effect” that gluten, casein and soy may have on our children’s bodies. There is also significant research on gut flora/gut dysbiosis in children with autism.
These effects might include things like slurred speech, poor eye contact, unstable gait, high pain threshold, poor sleep patterns, high rates of self-stimulatory behaviour, poor responses, mood swings, aggression, isolation, self injurious behaviour, etc.
The easiest way to approach diet is to remove all possible culprits and then to reintroduce them, one food at a time, once the child has reached a “stable condition”, usually around four weeks.
Gluten – the sticky stuff, most often derived from wheat, barley, rye and oats.
It would help if gluten could be listed as such! Instead one needs to learn and look out for the following names as possible hidden sources of gluten.
- Vegetable fat
- Vegetable protein
- Vegetable oil
- Natural flavours
- Natural colours
- Malt extract
- Jellying agent
- Hydrolysed vegetable protein
- Vegetable gum
- High protein flour
- Anti-caking agent
Gluten is also found in foods like flour, bread, pasta, cake, pizza, battered foods, cereals, some supplements, some medication, play dough, dog pellets, sweet and salty biscuits, sauces, marinades, couscous, flavoured rice, processed sausage and meat, fries (sometimes coated with flour to prevent sticking).
Casein – the protein derived from the milk of any animal
Casein is commonly found in:
- Breast milk
- Goat's cheese
- Cold meats
- Sweets (Many sweets include milk solids.)
- Whey powder (often found in chips)
- Supplements containing lactose (It is important to note that “lactose free” means that the sugar derived from milk has been removed, not the protein.)
- Processed meats and sausages
- Some shampoos
- Some medications – possibly containing “caseinate”
- Cremora and other creamers
- Baby formulas
- Milk powder
- Ice cream
- Prepared soups
- Lactic acid
Soya, used very commonly in foods nowadays, and very often in the form of a preservative, i.e. vitamin E
Do these look familiar?
- Oriental mix
- Preservative – vitamin E (common in fish oils)
- Eye Q
- Soya sauce
- Non-dairy baby formula
- Soya milkshakes and other milk replacements
- Chinese foods
- Dehydrated vegetable protein
The three groups above are implicated in the so-called “opiate or morphine effect” we so often see in children with ASD. These are “perception altering” proteins and will not be reintroduced initially. They are also often foods that trigger an IgG reaction in the gut (antibodies are developed to these foods when they are consumed over time).
Trial and error has shown us that “offending foods” may go beyond these three groups and are initially excluded on the Baseline Diet to ensure that they are well tolerated when reintroduced.
Protein derived from all nuts, seeds, beans, pulses and legumes
This may include:
- Sunflower oil
- Grape seed oil
- Cocoa (all chocolate)
- Baked Beans
- Almonds/Cashews/peanuts, etc.
- Black pepper
Phenols – the colours in food
Phenolic compounds have a similar molecular structure to of that of alcohol, and often produce the “drunken effect” we see in many children with ASD. Apples are our worst culprit here, so avoid ALL forms of apple or apple juice/concentrate/flavours.
- Olive oil
- All berries
- Sweet potato
Helpful Hint: a cup of Epsom salt (magnesium sulphate) in a child’s bath may alleviate some of the phenol-related behaviour by supporting the PST (phenol-sulphur-transferase system).
Many children with ASD seem to have a problem digesting complex carbohydrates (see Specific Carbohydrate Diet and Autism), therefore removing potatoes and other complex carbohydrates at some point in the diet and reintroducing them, might be worthwhile.
Corn – the main replacement for gluten
Many children with ASD react to corn, often a culprit for mood swings, aggression and general “low tolerance” behaviours.
- Vegetable oil
- Mealie meal
- Mustard, etc.
Other common offenders include eggs, tomatoes, fish and seafood. It is most important to note that a child-specific diet can only be established by eliminating all offending foods for a short period of time and then reintroducing foods systematically. A food diary is imperative to keep track of foods that are well-tolerated, those that need to be eaten in rotation (every four to five days), or those that need to be excluded from the diet until the gut has healed and tolerance improves.
Reintroducing foods must be done, one food at a time, every five to seven days. Be careful not to introduce more than one new thing, as backtracking will be required to remove both or more if there is a reaction. An elimination diet is a long painful journey, with a lot of uncertainty about whether or not the child can tolerate certain foods. An initial Baseline diet is so much easier, as it ensures a reaction when new food is introduced. The child needs to be observed to see if it is well tolerated or not.
It is always important to check labels and contact suppliers. Try to focus on what is IN THE PRODUCT and not what is NOT IN THE PRODUCT. Read labels carefully!
What can the child eat?
Do not introduce anything your child is not accustomed to eating already. Be flexible about portions, but stick to the diet 100% for 6 weeks. Start reintroducing fruits or nuts (as explained above) every five days. Keep a food diary for your own reference. These are the basic foods that your child can eat:
- All meats (as long as there are no additives and come from a reliable source)
- Pork or Bacon (ensure that there are no additives… read labels!)
- Fruit and vegetables
- Olive or avocado oil
- Sea salt
- Fresh or dried herbs
Most of the parents who have unsuccessfully attempted the “gfcfsf” diet, simply received the incorrect information:
- They replaced their child’s bread with “gluten free” products, which usually contain corn, soy and other replacements and also replaced dairy with soy. Most of our children are intolerant to soy (in fact, most of our children will never tolerate soy), so the benefit of eliminating foods was not observed correctly.
- The children were introduced to foods they had not eaten before, to which they were probably intolerant.
- They were given a list of so-called “clean” products, many of which contained gluten and casein.
- There is widespread Ignorance regarding the difference between wheat-free and gluten-free. It is horrendous how few people or suppliers actually know the difference – oats for example also contains gluten.
- Parents think that a little bit can “do no harm” and do not realize what is actually happening in their children’s bodies. They are also often unaware of hidden sources of the offending substances!
The Specific Carbohydrate Diet
Many families find the SCD diet really helpful and early findings are positive.
Previously reviewed by Noleen Seris, clinical psychologist
Reviewed by Jenny Buckle, Reach Autism SA, (November 2010)