Autistic Spectrum Disorder (ASD) is a pervasive developmental disorder (ICD 10, DSM-IV) that occurs on a spectrum and thankfully is no longer considered a psychosis. Persons diagnosed with ASD are commonly accepted as presenting with a triad of impairment. These impairments usually include; 1) social skills deficits which mean that forming friendships is a frequent difficulty, 2) language and communication difficulties which often mean that the person will have trouble understanding and retaining information provided in the verbal format and will struggle with subtleties of language such as sarcasm or inuendo, and 3) difficulties with flexible thinking which often means that a person with ASD has difficulty taking different perspectives, empathy, and any sudden changes to routines. Persons with ASD will often find comfort in repetitive routines which others cannot understand or may find unusual. Persons with ASD also regularly have difficulties with motor coordination and may have difficulties processing incoming sensory information. This list of difficulties is by no means exhaustive. There are many other daily struggles for a person presenting anywhere on the Autistic spectrum. But whether you are into brain training for children, are a parent or a teacher of a child with ASD, or are a certified Applied Behavior Analyst, here is a list of things that I think a child with Autism wants you to know.
1. We struggle to make friends
This doesn’t mean that we don’t want to have friends, but we have varying degrees of success depending on how we seek people out. In Lorna Wing’s classic book, The Autistic Spectrum, she identifies four types of social interaction impairments faced by persons with the condition. These included the aloof type (who often behave as though other people simply don’t exist), the passive type (who accept social approaches but do not initiate them), the active-but-odd type (this group will often actively seek out social contact but often will do so in a peculiar, one-sided fashion, or can go on about their own interests only without realizing that others may not share those interests), and, finally, the overly formal or stilted type (who try very hard to behave well and rigidly adhere to all rules and conventions). So, whichever category your autistic person falls into, struggling socially tends to be part of their condition.
2. We struggle to communicate, but this does not mean we are not trying to be heard
In 1943, when Leo Kanner first started talking about ‘early infantile autism’, this was one of the things that he reported. A person with autism may or may not have difficulty with their grammar or vocabulary, but most of them will struggle in the manner in which they use language. Many children with autism never learn to speak. However, many others do learn to speak and can speak quite well, but may learn much later than their same-age peers. Please do not confuse a difficulty communicating with not wanting to be heard. A person with Autism may try very hard to have their needs met or their feelings understood, but it can be very difficult to effectively get your point across when your expressive language skills are limited or your manner of communicating is not the same as those around you.
3. We have difficulties understanding the spoken words of other people
People with autism have extremely varied abilities to understand language. Lorna Wing reports that most do have some understanding, but this often does not include things like jokes or the finer nuances of language. Many take a literal interpretation of language that can make things like sarcasm and analogy quite confusing. However, many persons with autism, with practice, can make great gains in these areas, even though it may not ever come as naturally to them as it does their to their peers. We also have trouble understanding and using non-verbal communication. Sign language may not be enough if our spoken language is not well developed, because we often have equal difficulties understanding facial expressions, body language, and any range of gestures that usually coincide with the spoken word.
4. We sometimes use a different intonation than other people
In fact, sometimes we use a different accent from our families and communities completely. Sometimes our voices sound robotic or mechanical. This is not atypical for someone with autism, even though it might sound unusual to other people.
5. Imagination and pretend games are not fun for us
We like repetition and routine, not spontaneity and surprises. So, what seems like great fun for a person without Autism may actually be very upsetting for someone on the Autistic spectrum.
6. We love simple, repetitive activities, but we may graduate to more elaborate, repetitive routines as we get older
In 1973, Kanner described how some autistic children would invent routines for themselves such as tapping on a chair before sitting down or standing up and sitting down three times before eating a meal. He went on to describe how other children might require each member of the family to always sit in the exact same place at the dinner table or insist that a morning walk should always take exactly the same route. This is all part-and-parcel of how persons with ASD find comfort in sameness and are fearful of changes, but it can seem quite unusual to an outsider looking in. In fact, sometimes in our need for sameness, we might cling to an object that others simply cannot see the value of. Indeed, some of these objects may become our most preferred items.
7. Many of us like Thomas the Tank Engine
Some experts have speculated that this is because of the mechanical and repetitive characteristics of the characters in the show, but nobody really knows exactly why there is such a draw to Thomas the Tank Engine. Of course, there are many other shows and television characters that people with autism enjoy, but they often tend to be programs where there is a significant amount of repetition by the actors in a certain sequence.
8. We often engage in stereotyped movements
In plain English, this means that we might do things like repetitively flick our fingers, flap our arms and hands, jump up and down, roll our heads around, or rock while standing up. It is not known why autistic people perform stereotyped movements, but there seems to be an escalation of these movements when the person is excited or when they are trying to seek sensory input. Typically-developing babies and toddlers will engage in a lot of these movements too, but with increasing age and self control, many of these physical behaviors cease or greatly decrease. However, they may not cease in people with ASD. In fact, a person with ASD can become very distressed if forced to suppress these movements. If you want to help a person with ASD when they are in distress, please be aware that they may need this type of sensory stimulation, and indeed it might be very calming for them to engage in it.
9. Some of us can be very clumsy, and we might have unusual gaits and posture
When Dr. Hans Asperger originally described the syndrome as he saw it in 1944, he noted that many of these children had underdeveloped motor coordination skills, handwriting, and time management. This is still true today, but not every person with ASD has awkward or underdeveloped fine or gross motor skills. Indeed, there are many persons, particularly those that are on the higher-functioning end of the Autistic spectrum, that can be very skilled athletes.
10. We have great difficulty imitating other people’s facial expressions, and yet we often imitate other people’s actions or echo their words
The technical terms for these behaviors are echopraxia and echolalia (Wing, 1996). It is often seen as paradoxical that it is so common for an autistic person to echo another person’s words and actions in what seems to be a meaningless fashion, when it is so essential to social development to meaningfully imitate things like two-way conversations, facial expressions, and eye contact.
11. We may ignore or seem not to hear loud noises, yet we might be extremely sensitive to sounds that other people barely notice
This is another paradox of the autistic spectrum. It was first noted by Itard in 1801 in Victor, The Wild Boy of Aveyron. Itard noted that Victor never responded at all to the loudest of noises like the explosion of firearms, yet never failed to respond to the sound of a walnut being cracked open or any other “eatable” which he enjoyed. Other children with autism can become extremely distressed by certain sounds and noises, but this will often fade with increased age.
12. We can have seemingly contradictory responses to visual stimuli
For example, we may be fascinated by bright lights, but very distressed by flash photography. We also may not always look at a whole item or person, preferring instead to focus on an outline of a person or what others might consider some arbitrary physical features of an object (e.g., the leg of a chair rather than the whole chair). It has been suggested that the autistic child may make more use of the peripheral part of the retina which focuses on outline and movement, rather than central vision, for details. This part of the retina is mainly used by others in near-dark conditions. It is interesting to note that many autistic children can find their way perfectly well in the dark and may not always turn a light on. This, too, tends to fade with age.
13. Certain textures, tastes, and smells that are barely noticeable to others can be very offensive and distressing to us
While we might not be able to handle certain fabrics of clothing, we might not notice when something is too hot or too cold. We may not even notice if we have been badly hurt or injured. This seems unusual to non-ASD people, but it is seen regularly in someone with ASD. It seems that, like with all of our other senses, we just don’t seem to interpret incoming stimuli the same way that other people do.
14. Many of us prefer the same narrow range of foods again and again
This may be related to our need for uniformity, but some have speculated that we don’t always recognize the sensation of hunger. However, many of us drink liquids excessively and our thirst cannot seem to be quenched. One piece of good news here is that when we are engaged in other activities, we can forget about this sometimes constant thirst.
15. Many of us have high levels of anxiety and fear, but this is not necessarily because we are autistic
Much of this anxiety and fear comes simply from the fact that a situation has arisen that we do not understand or did not expect. If you were in our shoes, you might be scared too.
16. Learning difficulties are common for those presenting with ASD
That being said, about 10% of autistic children have very strong skill sets, even compared with typically-developing, same-age peers. This can sometimes come about because we practice a task in such a repetitive manner that we can become much more skilled than others. We also tend to obsess about small details in our special area that other people may not take the time to notice. This can really be to our advantage in developing a specialized skill set and can set us apart in a very positive way.
17. We don’t always act the way you think we should
In fact, very often, because we struggle with language and communication, we might do things that other people think are downright strange. We might think nothing of stroking the hair of a stranger on the bus or taking off our clothes for a dip in a neighbor’s swimming pool. We might also say things that will make others very uncomfortable, like commenting on your friend’s weight gain or the bus driver’s bald patch. Furthermore, it is difficult for an autistic person to tell a lie. We describe the world as we see it, without sugar-coating or rose-colored glasses.
18. The most capable of us may go on to lead completely normal lives, and many of us might marry and even have children of our own
However, for those with more significant impairments in intellectual functioning and social skills, we may need lifelong care.
19. Whatever our age and intellectual ability, we can improve our skills
We can make progress beyond what anyone has ever thought possible through the understanding and application of the science of human behavior. Behavior analysts have published hundreds of research papers in the area of autism. For this reason, Applied Behavior Analysis is regarded as the only scientifically validated treatment for autism. Click here to see more on how ABA can be used in the treatment of autism. Click here for conferences and training for educators, parents and clinicians interested in using behavioral technologies for effective change.
20. Finally, and for the last time, the MMR vaccine does not cause autism!
There is no debate in the scientific community about this. Read Chapter 16 in Bad Science by Dr. Ben Goldacre if you don’t believe me. Check out the Centers for Disease Control and Prevention’s 2014 report if you don’t believe Dr. Goldacre. If you still remain unconvinced, you should note that the only scientist who ever published a paper suggesting that the MMR vaccine caused Autism was stripped of the right to practice medicine in the UK as a result of the paper he published being deemed fraudulent. The journal that published that paper, The Lancet, retracted the paper in part in 2004 and in full in 2010.
Featured photo credit: Shannon O’Brien via shannonrosephotography.weebly.com