What Autism Spectrum Disorder Is, and What It Is Not

When you first hear the words "my child may have autism spectrum disorder," your mind may fill with many false beliefs built up over the years. In this chapter we'll clearly define what autism is, and, perhaps just as importantly, explain what it is not. We especially encourage you to read this chapter carefully, because a great deal of the needless worry and guilt you'll run into within the family, at school, and in the wider community comes precisely from the false beliefs we'll address here.

• Common False Beliefs and the Facts
• "Vaccines cause autism"

This is the most repeated false belief in the autism field, and the one science has most firmly disproved. Dozens of large-scale scientific studies covering millions of children around the world have found no causal link between vaccines and autism. The single 1998 article that this claim came from was retracted because of serious scientific misconduct, and the author's medical license was revoked. The fact that autism signs begin to be noticed around 12–24 months, the same period when most vaccines are given, is a coincidence in timing, not cause and effect: this is exactly the age range when social and language development is moving quickly, and so delays become noticeable for the first time.

"Autism is caused by cold or uninvolved parenting"

The "refrigerator mother" theory, popular in the 1950s and 60s and now completely abandoned, claimed that autism was caused by emotionally distant parenting. This theory has no scientific basis, and it caused countless families, especially mothers, to feel deep and unfair guilt. Today we know that autism is a developmental difference in the brain that is present from birth and largely genetic; it has no causal connection to parenting style.

"Every child with autism has an intellectual disability"

This isn't true. While some children with autism do have an accompanying intellectual disability, there are also many children on the spectrum whose cognitive abilities are average or above average, and some who even have exceptional talents in certain areas. Intellectual capacity and the severity of autism are two independent dimensions; even if a child's speaking ability is limited, that doesn't mean their capacity to understand and think is limited too, a distinction that is a critical point we'll come back to in later chapters.

"Children with autism don't show love or form attachments"

Children with autism may express love and attachment in ways different from their typically developing peers; but this doesn't mean love or attachment is absent. A child may avoid eye contact, may not like being hugged, and yet at the same time feel deep trust and attachment toward their parent; they may show that attachment by playing with a particular toy next to you, by drawing you into a certain routine, or simply by being in the same room with you, not talking but comfortable. We'll cover this in detail later in this chapter and in Part Six.

"Autism 'goes away' later or is completely 'cured'"

Autism is a lifelong developmental difference in the brain; it isn't an illness that gets "treated and eliminated." But this never means a child can't grow and develop. With the right support given early, many children make very clear progress in social communication, language, and adaptive skills; in some children the clinical picture eases so much at later ages that their need for support in daily life becomes minimal, and they may no longer meet the diagnostic criteria on standard assessment tools. But the underlying developmental difference in the brain persists in some form; these children often notice that their autistic traits become clear again in stressful, tiring, or highly stimulating environments.

"Autism only occurs in boys"

Although autism is more often recognized in boys, it also occurs in girls, and it is probably under-recognized in girls because current diagnostic tools are based on the presentation that is more typical of boys. We'll cover this topic in detail in Chapter 11.

"Certain diets or food additives cause autism"

Claims that gluten, casein, sugar, or certain additives "cause" autism are not supported by science. Some children with autism may have accompanying gastrointestinal sensitivities or selective eating patterns (see Chapters 28 and 31), but this doesn't mean that nutrition is the underlying cause. Keeping this distinction clear is important to prevent families from turning to unnecessary restrictive diets that can sometimes lead to nutritional deficiencies.

"Every child with autism has a special (savant) talent"

The "savant" picture (an extraordinary special talent) so often shown in popular culture is actually seen in only a small minority of children with autism. This exaggerated image can create unrealistic expectations and can also make autistic children who don't have a special talent, or their families, feel "not good enough." Every autistic child has their own strengths and weaknesses; these don't have to take the form of a striking "superpower."

Info Box

Autism isn't caused by parenting style, vaccines, eating habits, or "not being loved enough."

Scientific evidence shows that autism is a largely genetic developmental difference in the brain.

Intellectual capacity, level of language, and severity of autism are independent dimensions; knowing about one tells you nothing certain about another.

Autism Isn't a Loss of Ability, It's a Different Way of Processing

The "neurodiversity" approach, which has gained more and more acceptance in the autism field in recent years, suggests treating autism not only as a list of deficits but also as one form of the natural diversity of the human brain. This view doesn't deny the need for clinical support; on the contrary, it emphasizes that the aim of support shouldn't be to "normalize" a child, but to build on their strengths while giving them tools in the areas where they struggle.

Many autistic people have strengths such as an extraordinary attention to detail, an edge in recognizing patterns, deep expertise in specific subjects, visual-spatial thinking, honesty, and consistency. Throughout this book we'll both address the difficulties honestly and try to show you how to support these strengths. In our clinical approach the goal is always to hold both together: not to ignore real difficulties, and not to define a child only through a list of deficits.

Tip / Practical Suggestion

Question every piece of "information" you hear about your child from those around you. A lot of the "autism information" circulating on social media or among acquaintances doesn't match current scientific findings. Ask the specialist following your child directly about anything you're unsure of; always run any piece of information that begins with "I read online" through a clinical review.

Common Reactions Within the Family and Community

During and after the diagnosis process, you may often run into well-meaning but uninformed comments from extended family and your social circle: sentences like "There was no such thing in our day, he was just naughty," "You're spoiling him too much," "He'll grow out of it, don't worry," or "Stop dragging him from doctor to doctor, you'll wear the child out" may sound familiar. These comments usually come from a lack of knowledge, not ill will. Sharing the facts we've covered in this chapter with those around you, in calm and brief sentences when needed, can protect both you and your child from unnecessary pressure.

Chapter Summary

In this chapter we went through the most common false beliefs about autism one by one and set the scientific facts against them. In the next chapter, we'll look at how often autism occurs in society, how that rate has changed over time, and the reasons behind that change.