What is autism?
Autism, or Autism Spectrum Disorder (ASD), is a term used to describe a different way of perceiving and interacting with the world, due to differences in how the brain is wired. About one percent of the population has this neurological variation. ASD is classified by the medical community as a neurodevelopmental disorder.
Some people with autism prefer the term “neuro-atypical” because it describes this difference without labeling it as a deficit. For that matter, there is controversy surrounding even the words used to talk about those with ASD.
While ASD encompasses a wide variety of characteristics, there are some common traits. The most obvious traits, those that parents often notice first, include:
- Delayed or impaired communication and social skills
- Lack of interest in communication
- Failure to make eye contact
- Persistent deficits in socialization
- Restricted or repetitive behaviors
Other traits common to those with autism are:
- Sensory sensitivity
- Non-standard ways of learning
- Executive function challenges
- Intense focus on a narrow field of interest
- Need for consistency, routine and order, sometimes seen as rigidity
ASD is an umbrella term that includes conditions such as Autism, Asperger’s Syndrome, and others. While some with autism do not communicate verbally, others are excellent communicators, having learned a kind of code-switching that facilitates their relationship with the “neuro-typical” world, even if they have to work extra hard to do so.
It’s impossible to generalize about autism. Each autistic individual is a unique person, like everyone else. As a result, each child — and family — coping with autism has a unique set of challenges.
For many years, those with autism had others speak for them. Now, many autistic individuals have come forward to speak for themselves and share their viewpoints. Some have shared what it is like for them, and have tried to show us how they experience the world. Others share broader stories, mentioning their ASD as an aside. Some believe that it is a mistake to characterize ASD as a “disorder.”
What signs should alert you to look closer at ASD?
ASD usually presents itself early. Signs usually appear in early childhood, sometimes as early as the toddler stage.
If a child is not meeting these typical milestones, you may want to take a closer look:
- Consistent eye contact and smiles or happy expressions by 6 months
- Range of reciprocal facial expressions and babbling by 9 months
- Gesturing (pointing, showing, waving, etc.) and babbling by 12 months
- Single words by 16 months
- Two-word spontaneous phrases (rather than repetitive or stereotyped phrases) by 24 months.
If you notice that a child is failing to meet these milestones, or if you notice a loss of language skills, or any regress of social skills, you should consider an evaluation.
Boys versus Girls
Although Autism and Asperger’s Syndrome (once a separate condition but now considered part of ASD) appear to be more common in boys, it seems that girls frequently go undiagnosed. This is because girls often show different symptoms than do boys.
It is believed that many girls who may be “on the spectrum” are better at masking their differences. They are better able to fit in, and they tend to develop strategies such as scripts that help them. Because social pressures may be greater for girls to be social and verbal, they are under increased pressure in these areas. They may not show as many of the physical symptoms that ASD boys may show, such as repetitive behaviors. Research also suggests that ASD girls often have an extremely rich and active imagination, and may use pretend play as an escape from the social pressures of a “neurotypical” world.
Because girls often use scripts to navigate social conversations, they may appear typically well-socialized – at a single visit. It is only through repeated conversations that the rote nature of these conversations may become apparent.
Getting Your Child Evaluated
If you are noticing any of these delays or traits in your child, you should be concerned, but don’t panic. You can’t rely on your own observations. You need to get a formal diagnosis by an experienced professional.
The diagnosis process involves two phases.
First, your mental health professional – a psychiatrist or other specialist – will perform a general developmental screening with your child. The second part is a comprehensive diagnostic evaluation, including an interview with you the parent, and another meeting with your child. This second meeting is a combination of interview, play, conversation, and general observation of the child. There are several diagnostic tools that may be used, including the ADOS (Autism Diagnostic Observation Schedule) and the ADI-R (Autism Diagnostic Interview, Revised).
Dealing with Your Response to the Evaluation
If your child is diagnosed with ASD, what happens next?
Take a deep breath. Allow yourself time to absorb and process the information you have been given.
First, you need to understand that autism is a neurodevelopmental condition. Your child’s autism is not the result of anything that you or your partner did or didn’t do. It is not your fault.
It’s natural to be devastated by the news when you learn that your child’s path may be different from what you had imagined. Allow yourself to go through all the emotions that this adjustment brings on. You may find yourself crying, worrying and imagining the worst.
Coming to grips with your child’s diagnosis is hard. The process mimics the mourning process, with its five stages of denial, anger, bargaining, depression and acceptance. But it’s important not to fall into the trap of imagining and dwelling on the worst possibilities.
In reality, we can never control the life-path that our child will experience, and we never could. Parents of children with autism, along with parents of all children with emotional, cognitive or physical special needs, know that no parent of any child ever knows or can control their future.
Learning to let go is key to moving forward. Letting go of blame. Letting go of expectations. Letting go of our old priorities, and learning to accept a new perspective of what’s important. Only when we work to free ourselves of the burden of blame, guilt and depression can we be fully present and effective for our children.
Raising a child, any child, is a marathon, not a sprint. There will be good days and bad days. There may be times when blame, guilt, depression, worry and imagining the worst overtake us. But as we adjust, we learn to open our hearts and experience all the joy and love of being a parent to our unique child..
Working to connect with your child and getting to know him or her focuses your attention, and each stride forward is exciting and thrilling. There will be frustrations and set-backs, but there will also be unexpected moments of emotional connection, and because they may be rare, they are precious beyond what others may ever know.
Understanding Your Child’s World
People with autism experience the world in a different way. The term “neuro-atypical” was coined by people with autism to express the view that autism is not a disorder or deficit, but merely a different but equally valid way to interact with the world.
Every person with autism experiences the world differently, but there are some common themes.
Here are some of the challenges and advantages that your child with autism may experience:
Autistic individuals are often extremely sensitive to sensory input. What does this mean?
- Noise. Autistic individuals often have trouble filtering out unwanted sensory input. Your child with autism can be like a super-hero when it comes to noise. Noises which “neuro-typicals” may experience as background noises and can easily ignore, are distressing for autistic individuals. The sound of a ceiling fan; a florescent light buzzing; a radiator hissing; someone typing on a computer – noises like these can be anywhere from annoying to unbearable. Now, if those “background” noises are distressful to your child, just imagine how it feels being in a room full of children talking, yelling, and slamming books around.
- Textures. Your child with autism may be extremely sensitive to rough or scratchy textures. Clothing can be an issue. Labels on shirts can be too scratchy unless removed, and some fabrics may not feel comfortable enough. Pants with restrictive waistbands or those that need belts may be uncomfortable. Elastic-waisted pants like sweatpants may be preferred. Luckily, “athleisure” is now a new clothing category!
- Visual stimulation. Very busy or distracting environments can be overwhelming for your child. Busy visual environments are often noisy as well. It’s just all too much!
Dealing with the overwhelming experience of all these vivid, too intense sensory stimulations is tough, but your autistic child has developed ways of helping him or her cope.
Repetitive Behaviors and Routines
When it’s all just too much, common repetitive behaviors like hand flapping, rocking, moaning, and other ritualized activities may help your child cope. Although these behaviors can be distressing for “neuro-typicals” to watch, it’s important to understand the role they play in your child’s emotional state. Your child is not trying to be frightening, annoying or confrontational; he or she is using all the tools possible to help him/herself deal. As your child grows, develops and works with professionals, he or she can find other ways of self-soothing that fit in better with the greater “neuro-typical”
If your autistic child develops intense interests, please allow and encourage these. While you may tire of hearing about their passions over and over, and in extreme detail, do your very best to not shut them down. The “narrow but deep” interests of your autistic child are as valid as any of your own interests, even if you don’t share your child’s fascination. These intense passions and focus on details are often a great strength, and many adults with ASD find themselves uniquely suited to a variety of highly-sought-after professional or technical work, including digital special effects, mathematics, urban planning, coding, scientific research, and much, much more.
As the parent of an autistic child, you may want to learn all you can about autism. One good way to start is with the slew of books written by autistic individuals. In the past, only “neurotypicals” described autism. But, in the last decade or so, many autisitic individuals have spoken for themselves. “Look Me in the Eye,” “Nobody Nowhere,” “The Reason I Jump,” “Born on a Blue Day,” and many other autobiographies written by autistic individuals give insight into their world.
Media and Popular Culture
Popular culture includes more examples of neurodiversity than ever. Television, theater, and movies feature ASD characters in supporting or main roles. Online, there are many videos posted which aim to show what it is like to experience the world as an autistic person. Watching these can be useful, as we learn to shift our expectations and try to understand the challenges that our child may be facing.
There is more support, research, and resources about autism than ever before. Many of these organizations are geared primarily for either family of autistic individuals, or autistic individuals themselves.
For you, the parent, you may find the support, both emotional and practical, offered by these organizations to be invaluable.
For your child, organizations by and for autistic individuals may be even more important. As your child grows up, he or she may want to look into an organization for autistic individuals such as ASAN – Autism Self Advocacy Network. There are social groups and practical groups for autistic individuals in most major urban areas, and online options everywhere.
After your child has been evaluated, meet with your professional to discuss next steps. Depending on your child’s age and where he or she falls along the spectrum, your professional may have suggestions for moving forward. These may involve small-group social skills classes as well as individual coaching.
You may want to advocate for your child within the school system, or hire an advocate. Advocates are useful for navigating the morass of accommodations, support, and other systems which will help you and your child.
What Does the Future Hold for Your Child?
No one knows! No one knows the future for any of us. But your “neuro-atypical” child can expect a mix of successes, challenges and frustrations – just like anyone else.
If your autistic child is so-called “high functioning,” he or she has many skills and strengths that most “neuro-typicals” may lack. A razor-sharp interest in certain topics, and the focus to research and study those topics, means they can easily become experts in a field. Attention to detail, and concentration to the exclusion of all else, can take them far. In today’s tech-forward world, there are many areas in which they can not only excel, but find interest, satisfaction and fulfillment.
If your child is further along the spectrum, more closed-in, you should realize that there’s much more going on than is visible from the outside. Your autistic but non-communicative child is experiencing a rich but different world than you. Providing the means for these worlds to overlap more often is the challenge. Your child is probably more interested in exploring his or her perspective right now. But as we build as many bridges as we can, and provide more opportunities to connect, the hope is that your child will come to value connecting with you and your world more often… as long as it’s on their own terms.
Patience can be hard. It’s so easy to get swept up with the demands of our “neurotypical world.” It can be daunting, especially if you imagine that it’s all easy for everyone else. It’s a challenge to stop, take a moment and make the effort to really reach out and try to understand where your child is, what he or she is experiencing, what he or she is needing and wanting.
No one is perfect, we’re only human. Patience, perspective and the ability to deal with challenges calmly and positively are goals to aim for, and it’s unrealistic to think that we won’t falter. We can only strive to do our best, and to forgive ourselves when we inevitably fall short.
Each and every person with autism, just like each and every other person, brings a unique and valuable perspective on the world. Rather than trying to “fix” autism, it’s better to view autism as another way of interacting with the world. The goal is to bridge the gap, and for both autistic and “neuro-typical” individuals to learn enough of the other’s language to be able to communicate the most important messages.
Communication needs to go both ways. But that doesn’t mean that both parties need to talk. More importantly, both parties need to learn to listen in whatever way they can.
Caught up in the daily schedule, it seems like the most important messages are practical: “It’s time to us to go now.” “No! I’m not ready!” But in between all of that, the goal is for both of you to communicate something more important: I value you. I respect you. I try to listen as best as I can. And I love you in my own special way, and I need you to accept that love as it is.