Autism Facts & FAQs
Autism Facts & FAQs
Frequently asked questions about autism
We have collected here some of the questions that are frequently asked by parents and people newly diagnosed with autism. We do not intend for these to be complete and definitive answers, but are hopeful that they will provide some help and clarity.
Some of the questions listed here have been answered in greater depth elsewhere on this website and in our free autism publications. We encourage you to peruse our other pages especially What is Autism? and Can Autism Be Cured? And if you are interested in scientific research evidence those resources provide links and references to hundreds of relevant scientific studies.
Autism myths and truths – how to distinguish facts from fiction
The world of autism is sadly full of myths and misconceptions. Many things are said about autism and accepted at face value that have no grounding in reality, and no scientific basis.
Autism was for a very long time claimed to be caused by ‘refrigerator mothers’. That narrative went unchallenged for many decades and was perpetuated by expert professionals and those in the position of authority.
While the ‘refrigerator mothers’ theory is no longer being held up as the universal truth, there are nowadays many other claims about autism that are frequently perpetuated and appear universally accepted but are just as false.
For example if you are told that your child must have been born with autism (even though you witness them develop normally and regress into autism) or that autism is always for life and unchangeable (even though your friend told you about massive changes in her child’s symptoms after chaging her child’s diet), before you accept those views – just because they are universaly accepted and come from someone in a position of authority – do first stop and THINK.
Think about the supposed evidence that autism is always from birth (there is none – the science actually shows that at least one third of children regress into autism after a period of neurotypical functioning and normal development). Ask about the evidence that autism is always static and for life (scientific research often shows that autism core symptoms often fluctuate in severity, that some children and adults regress further into more severe autism, and that a substantial minority of cases improve to such a degree that they no longer meet diagnosic criteria for autism).
When it comes to autism, we encourage you to therefore never accept anything that is said at face value, but always think and dig deeper for truths. Take into consideration people’s motivations for saying things that they say, and where they get their information from.
Always consider if the thing that you are being told about you/your child/autism in general matches your lived experiences, the experiences of people around you who you know and trust, if it has any grounding in reality, and if there is any real scientific and logical basis to those claims.
Just what is autism?
For now, autism is merely a behavioural label. In other words, if a person behaves in certain ways within the categories of communication, social interaction and repetitive behaviours, the label of autism can be assigned by a qualified professional.
Every individual and family can experience autism differently, with different symptoms and behaviours and their severity.
Current research points to autism-related behaviours being the downstream symptoms of physiological causes, including abnormal sensory processing and impaired control of motor function.
We have laid out in great detail on this page the current thinking on what autism is, and what it is not, based on latest scientific findings.
Does my child REALLY have autism?
Furthermore, autism is also commonly associated with anxiety, aggression, obsessive compulsive disorder, attention deficit, hyperactivity, depression and more – this complicates things in every way.
If you are questioning whether your child really has autism, it might be more important to ask yourself if your child struggles with issues beyond what should be considered the normal challenges children face and overcome as part of maturing.
If the answer to that question is yes, then regardless of the absence label or labels, and regardless of whether or not they meet the full diagnostic criteria for autism, your responsibility as a parent is to help your child reach optimal physical, emotional, social and psychological heath.
In other words, whether or not you seek or accept the label of autism, or any other labels, the goal should be to pursue optimal outcomes and increased quality of life.
Who understands what we are going through?
We encourage you to do everything you can to find your community, both online and in person. Our charity offers a great deal of support to allow you to find others who will understand from their own personal experience what you are going through, help lessen the learning curve and appreciate the importance of your questions. Please consider becoming a member of our community.
Why does my child have behaviours that I don't see in other children?
One of the best things about all children is their unique, quirky, unexpected and sometimes just fantastically unusual personalities and behaviours. But, maybe your child is engaging in behaviours that concern you. These behaviours might be symptoms of underlying physiological or health problems.
Sometimes unusual behaviours are sign of pain that cannot be expressed through language. For example, headaches, tooth pain, acid reflux or gastrointestinal pain could result in head-banging, aggression to others, self-injury, pushing the stomach against hard objects and other strange postures, avoidance of foods or craving of foods (to soothe the reflux).
Sometimes hyperactivity/inability to focus can be the result of food intolerances or frank allergies, blood sugar imbalance, or chronic mouth breathing as related to allergic response.
Sudden onset aggression or staring off into space can be the result of seizure activity.
Covering of the ears, constant side-glancing, strong need for repetitive movement (swinging, spinning, dropping objects) can all indicate sensory integration disorder.
These examples are only just a few of the many behaviours you might see in your child that are actually symptomatic clues that could help you direct investigations or choose treatments, interventions and accommodations that could improve your child’s quality of life and learning.
One of the many struggles faced by people with autism is something called diagnostic overshadowing, which means that once a person has received a diagnosis—such as autism—all other symptoms are attributed to that diagnosis without investigation.
Many parents have reported that their child’s behaviours (for example, poor sleep, self-injury, aggression, strange posturing) and even physical symptoms (for example, constipation, diarrhoea, dark circles under the eyes, eczema) have been dismissed by their doctors as just “autism”.
Autism is simply a shorthand. When someone receives that diagnosis it means that a professional has noted disabling deficits in social communication, and restricted and repetitive behaviour.
An autism diagnosis does not mean that a person is suddenly immune to all other possible physiological problems, and, in fact, the research is clear that people with autism are much more likely to suffer medical problems, which can often go undetected.
We encourage you to be especially aware of any behaviours your child might display that could possibly be symptoms of underlying medical problems that could be investigated and treated.
Is autism for life? Can one recover from autism?
Is autism for life?
From its identification as a disorder in the 1940’s, it was assumed that autism is lifelong. In other words, if a person has autism he or she was born with it and will die with it. This assumption is often shared with families who have a newly diagnosed child.
Many parents report seeing a regression in their child with autism. That is, their child experienced a loss of skills and abilities that had been previously acquired. This has now been confirmed by scientific studies.
While the distinction of regressive autism and classic autism have been around for decades, the assumption remained that autism is lifelong, despite the evidence that some children without any symptoms of the disorder regressed, losing skills and abilities that when present would eliminate the possibility of an autism diagnosis.
Upwards of 30% of parents have reported clear loss of social and communication abilities in the second year of life. While these kinds of regressions are easily noticed, current research is pointing to the fact that regression can be harder to detect and it is entirely possible that regression may be the norm.
Subtle but significant regressions, such as loss of previously established eye contact as early as three or four months, have been shown by research to be common.
What this research shows is that many children who have been considered to have classic autism, that is, who have been born with autism, in fact regressed, losing skills and abilities they once possessed, and that autistic regression may be far more common than previously thought.
All of this points to the fact that the definition of autism as lifelong is inaccurate.
Can one recover from autism?
Investigations are also being made (albeit in an extremely limited manner) into recovery from autism. Studies have shown that some percentage (from about 4% to 13%) of children might lose their diagnosis before the age of 8. This fact alone points to the reality that autism is not, by definition, lifelong.
Research shows that people with autism who suffer more severely from medical comorbidities (for example, gastrointestinal disorder or disease) are also more significantly impacted by the symptoms of autism. This established connection is reflected in the reports from numerous parents and clinicians who have investigated and then appropriately treated comorbidities in people with autism and seen improvement in behaviours and functioning.
Hundreds of parents, some of them in our own Thinking Autism community, report a complete recovery from autism, although other symptoms may remain, such as learning difficulties or ADHD. These children have not learned to hide their autism, but instead the symptoms that warrant an autism diagnosis have disappeared.
Both complete recovery and the remarkable improvements in symptoms that many people with autism have seen point to the fact that autism is not a lifelong disorder by definition.
We have written at great length on this topic on our Can Autism Be Cured? page. You will also find on that page links to scientific studies on regression and recovery from autism.
What therapies are available?
For an overview of medical issues many people with autism face, our charity has prepared Medical Comorbidities in Autism Spectrum Disorders: A Primer for Health Care Professionals and Policy Makers. This document can help you communicate more effectively with your health care professional about investigations and interventions that might be important especially in regard to comorbid medical conditions that may be significantly reducing quality of life.
We have also prepared Treatments and Therapies for Autism: Guide for Parents to provide an introduction to many of the developmental, sensory, motor, and biomedical interventions available in the UK. Other charities provide similar information. For example, Autism Research Institute website houses hundreds of information documents and webinars detailing intervention options.
Current research points to autism-related behaviours being the downstream symptoms of physiological causes, including abnormal sensory processing and impaired control of motor function. We have laid out in great detail on this page the current thinking on what autism is, and what it is not, based on latest scientific findings.
Do special diets such as gluten free diet work for autism?
CAN DIET HELP PEOPLE WITH AUTISM?
What we put into our mouths—our diet—must build and fuel every cell in our body. For that reason alone, it is clear that what we ingest and digest can make an enormous difference in our health.
Recently, a one year study involving 67 people with autism revealed the nutritional and dietary changes resulted in many improvements for most of the participants, including a significant improvement in nonverbal intellectual ability.
What we ingest (either through our mouths, our lungs, our skin) will have an enormous impact on health, but not everyone will react the same way to, let’s say, wheat or air pollution or skin cream. We have an incredible amount in common when it comes to how our cells and body systems function, but we are all individuals.
A simple example might help clarify this: if you became severely deficient in zinc and vitamin A, you might experience a wide variety of problems, including night blindness. That means, you would have been able to see well at night previously, but due to the lack of a mineral and a vitamin cells in your eyes were not provided what they need to function optimally.
Of course, you might suffer night blindness for other reasons, in which case ingesting more zinc and vitamin A would not change your situation. Or, because the zinc mostly acts to get the Vitamin A into you might ingest a lot of extra zinc and not experience improvements.
But, if you suffered night blindness because of this deficiency, and changed your diet to include lots of beef liver (very high in vitamin A) and oysters (very high in zinc) you could rightly determine that diet can help night blindness.
People with autism might share a diagnosis of behaviour but of course are all individuals. There is not an ‘autism’ diet. However, many parents of children with autism and adults with autism have reported improvements, both life-changing and small, by carefully altering what is ingested. There are helpful trends identified through experience and, more so lately, through research.
These are some very few, much simplified examples of dietary changes and how and why they might help some individuals.
INCREASING INTAKE OF ESSENTIAL FATTY ACIDS
Research has shown that children with autism are low in essential fatty acids. These fatty acids, known as DHA and EPA, are crucial to optimal brain development and function. Parents have reported that introducing fatty acids such as cod liver oil can improve concentration, behaviour, language, and happiness.
REDUCING OR ELIMINATING SUSPECTED SENSITIVITIES
One common dietary approach is to remove foods which may have components that an individual responds negatively to. We are all aware of the growing number of children with an anaphylaxis allergy to peanuts. This type of frank allergic reaction was uncommon a few decades ago; however, there is no doubt it exists now. The same phenomena could be true for lesser reactions, often called intolerances or sensitivities, and if that is the case for an individual an elimination diet can be helpful.
GLUTEN AND CASEIN-FREE DIET
An intervention that is often mentioned in relation to autism is the gluten-free and often casein-free (a milk protein) diet, often called GFCF. The GFCF diet is an elimination diet. Gluten is a sticky protein found in wheat, rye, barley and other grains.
Many people, including parents of children on the autism spectrum, as well as adults with autism, have reported success with GFCF diet. The diet used in the autism study linked above was a healthy gluten-, casein- and soy-free diet. But as popular as this diet is, and easy to try, it is clear that people are individuals and that this diet, just like everything else, does not work for everyone.
Research has provided some insights as to why gluten and/or dairy free diet may be helpful for some people, including research into inflammation especially of the gut and non-celiac gluten sensitivity, and the possible links between celiac disease and autism (see here, here , here and here).
There are some indications, according to recent research, that milk-free diets can improve problems related to cerebral folate receptor autoantibodies, which seem to be present in a proportion of individuals with autism (see here and here).
LOW CARBOHYDRATE DIETS
The low carbohydrate, high fat, moderate protein ketogenic diet, in which the source of fuel for each cell is transitioned from glucose to ketones, has been shown to be helpful in epilepsy, a condition much more common in the people with autism than in their non-autistic peers. Furthermore, slightly modified versions of a ketogenic diet, chosen especially for children with autism, have shown much promise in research trials for certain participants.
Some parents have seen an improvement in behaviour, sleep, and learning by eliminating or strictly reducing sources of added sugar. When this step is taken along with an alteration in diet to include more microbiome-friendly foods (that is, foods that include healthy bacteria and foods that will feed that healthy bacteria) they report less hyperactivity, improved bowels and digestion.
SPECIAL DIETS, HEALTHY NUTRITION AND DIETARY SUPPLEMENTS – THINGS TO KEEP IN MIND
It is important to note that just putting something in your digestive tract does not ensure actual use. If a child is not able to properly digest fat, for example, then including cod liver oil in the diet would not be effective.
Examples of dietary interventions that are about improving gut health and absorption of nutrients include use of digest enzymes, increasing stomach acid and/or bile, strengthening or altering the microbiome.
Apart from high-end therapies targeting the gut problems in autism, which are carried out by qualified practitioners in specialised clinics, simple things like eating fermented or cultured foods, improving chewing or reducing the need to chew, reduce stress around mealtimes, can lead to positive changes in gut health and gut microbial balance.
Many parents and people with autism have benefitted from finding the right healthy diet for their individual needs. While there is still much research to be done, especially research that targets people more specifically through biomarkers and not simply an autism diagnosis, thousands of individuals with autism have benefited from dietary changes.
But is is always worth repeating and remembering that what works for one person will not work for everyone. Even if there is one day a definitive proof that one single dietary approach, or one single nutritional supplement, benefits the majority of people with autism, your child might not belong to that group. And similarly, there could be things that work wonderfully well for your child, but will not be shown to benefit many other people.
Which interventions are best for my child?
That is both a crucial and difficult question. Recent research and the lived experience of thousands of families show that autism is not a homogenous condition and therefore no single approach will be the right one for each individual.
However, there are clear trends that can help inform decision-making. A recent study, entitled ‘Comprehensive Nutritional and Dietary Intervention for Autism Spectrum Disorder—A Randomized, Controlled 12-Month Trial’ by James Adams et.al showed that “the treatment group, compared to the non-treatment group, had significantly greater improvement in autism symptoms and developmental age” when provided a few safe, affordable and relatively easy to implement interventions such as changed diet, Epsom salt baths and nutritional supplements.
While this study doesn’t reveal a “best” intervention, it does demonstrate that simple interventions can be powerful, regardless of the age of the individual.
What most families have learned is that improving quality of life for a child is a long term process. Introducing one or two positive changes every few weeks can result in huge improvements over time.
The best intervention is establishing the mindset that progress is possible, help is available if you seek it out and that families can work together to create significant difference.
You may not find the best interventions for your child immediately.
In regard to health and quality of life, there is no magic pill, autism or otherwise. However, parents who arm themselves with good information and then mindfully track the challenges faced by their child, interventions undertaken and their results often report that life can improve considerably.
My daughter L was diagnosed with autism at the age of 3. This was a heart breaking time for us, we felt helpless and hopeless, as our GPs and paediatrician offered no hope of a normal life for her. We … felt isolated and had a lot of issues to deal with. Then I was lucky enough to come across Thinking Autism postings on Facebook, and their website. I found a wealth of information from them to be a real and practical help…
I regularly read TA posts on Facebook – it is so helpful that someone brings together information from the latest research and brings it to my doorstep! I also found some new methods and techniques to combat L’s allergies through TA postings, which help us a lot.
I also found out about local TA support meetings and attended a few of those. It was a great relief to find other parents in the same situation as us, and to share experiences and talk about issues that we all face. I found it the best type of support I got in our journey. It gave us strength to carry on fighting this complicated condition and we became good friends with some people we met there. L has made great progress as a result of therapies we implemented, and we are very grateful to Thinking Autism on providing the information without which this would not be possible. (I.P.)