Autism is a spectrum of closely related disorders with a shared core of symptoms. Autism spectrum disorders appear in infancy and early childhood, causing delays in many basic areas of development, such as learning to talk, play, and interact with others.
The signs and symptoms of autism vary widely, as do its effects. Some autistic children have only mild impairments, while others have more obstacles to overcome. However, every child on the autism spectrum has problems, at least to some degree, in the following three areas:
- Communicating verbally and non-verbally
- Relating to others and the world around them
- Thinking and behaving flexibly
There are different opinions among doctors, parents, and experts about what causes autism and how best to treat it, but also there is much that we still don’t know. There is one fact, however, that everyone agrees on: early and intensive intervention helps. For children at risk and children who show early signs, it can make all the difference.
One baby’s story
Melanie is a healthy one year old, but her parents are worried about her development because she’s not doing many things that her older brother did at her age, like playing peek-a-boo and mimicking expressions and gestures. Melanie’s mom and dad try to engage her with toys, songs, and games, but nothing they do gets her interest, let alone a laugh or a smile. In fact, she rarely makes eye contact. And although her hearing has been checked and is normal, she doesn’t babble, make other baby noises, or respond when her parents call her name. Melanie needs to be checked out by a child development specialist right away.
Early detection of autism is up to parents
As a parent, you’re in the best position to spot the earliest warning signs of autism. You know your child better than anyone and observe behaviors and quirks that a pediatrician, in a quick fifteen-minute visit, might not have the chance to see. Your child’s pediatrician can be a valuable partner, but don’t discount the importance of your own observations and experience. The key is to educate yourself so you know what’s normal and what’s not.
- Monitor your child’s development. Autism involves a variety of developmental delays, so keeping a close eye on when—or if—your child is hitting the key social, emotional, and cognitive milestones is an effective way to spot the problem early on. While developmental delays don’t automatically point to autism, they may indicate a heightened risk.
- Take action if you’re concerned. Every child develops at a different pace, so you don’t need to panic if your child is a little late to talk or walk. When it comes to healthy development, there’s a wide range of “normal.” But if your child is not meeting the milestones for his or her age, or you suspect a problem, share your concerns with your child’s doctor immediately. Don’t wait.
- Don’t accept a wait-and-see approach. Many concerned parents are told, “Don’t worry” or “Wait and see.” But waiting is the worst thing you can do. You risk losing valuable time at an age where your child has the best chance for improvement. Furthermore, whether the delay is caused by autism or some other factor, developmentally delayed kids are unlikely to simply “grow out” of their problems. In order to develop skills in an area of delay, your child needs extra help and targeted treatment.
- Trust your instincts. Ideally, your child’s doctor will take your concerns seriously and perform a thorough evaluation for autism or other developmental delays. But sometimes, even well-meaning doctors miss red flags or underestimate problems. Listen to your gut if it’s telling you something is wrong, and be persistent. Schedule a follow-up appointment with the doctor, seek a second opinion, or ask for a referral to a child development specialist.
Regression of any kind is a serious autism warning sign
Some children with autism spectrum disorders start to develop communication skills and then regress, usually between 12 and 24 months. For example, a child who was communicating with words such as “mommy” or “up” may stop using language entirely, or a child may stop playing social games he or she used to enjoy such as peek-a-boo, patty cake, or waving “bye-bye.” Any loss of speech, babbling, gestures, or social skills should be taken very seriously, as regression is a major red flag for autism.
Signs and symptoms of autism in babies and toddlers
If autism is caught in infancy, treatment can take full advantage of the young brain’s remarkable plasticity. Although autism is hard to diagnose before 24 months, symptoms often surface between 12 and 18 months. If signs are detected by 18 months of age, intensive treatment may help to rewire the brain and reverse the symptoms.
The earliest signs of autism involve the absence of normal behaviors—not the presence of abnormal ones—so they can be tough to spot. In some cases, the earliest symptoms of autism are even misinterpreted as signs of a “good baby,” since the infant may seem quiet, independent, and undemanding. However, you can catch warning signs early if you know what to look for.
Some autistic infants don’t respond to cuddling, reach out to be picked up, or look at their mothers when being fed.
Early signs of autism in babies and toddlers
- Doesn’t make eye contact (e.g. look at you when being fed)
- Doesn’t smile when smiled at
- Doesn’t respond to his or her name, or to the sound of a familiar voice
- Doesn’t follow objects visually
- Doesn’t point or wave goodbye, or use other gestures to communicate
- Doesn’t follow the gesture when you point things out
- Doesn’t make noises to get your attention
- Doesn’t initiate or respond to cuddling
- Doesn’t imitate your movements and facial expressions
- Doesn’t reach out to be picked up
- Doesn’t play with other people or share interest and enjoyment
- Doesn’t ask for help or make other basic requests
The following delays warrant an immediate evaluation by your child’s pediatrician.
- By 6 months: No big smiles or other warm, joyful expressions
- By 9 months: No back-and-forth sharing of sounds, smiles, or other facial expressions
- By 12 months: Lack of response to name
- By 12 months: No babbling or “baby talk”
- By 12 months: No back-and-forth gestures, such as pointing, showing, reaching, or waving
- By 16 months: No spoken words
- By 24 months: No meaningful two-word phrases that don’t involve imitating or repeating
Signs and symptoms of autism in older children
As children get older, the red flags for autism become more diverse. There are many warning signs and symptoms, but they typically revolve around impaired social skills, speech and language difficulties, non-verbal communication difficulties, and inflexible behavior.
Signs and symptoms of social difficulties in autism
- Appears disinterested or unaware of other people or what’s going on around them
- Doesn’t know how to connect with others, play, or make friends
- Prefers not to be touched, held, or cuddled
- Doesn’t play “pretend” games, engage in group games, imitate others, or use toys in creative ways
- Has trouble understanding or talking about feelings
- Doesn’t seem to hear when others talk to him or her
- Doesn’t share interests or achievements with others (drawings, toys)
Basic social interaction can be difficult for children with autism spectrum disorders. Many kids on the autism spectrum seem to prefer to live in their own world, aloof and detached from others.
Signs and symptoms of speech and language difficulties in autism
- Speaks in an abnormal tone of voice, or with an odd rhythm or pitch (e.g. ends every sentence as if asking a question)
- Repeats the same words or phrases over and over
- Responds to a question by repeating it, rather than answering it
- Refers to themselves in the third person
- Uses language incorrectly (grammatical errors, wrong words)
- Has difficulty communicating needs or desires
- Doesn’t understand simple directions, statements, or questions
- Takes what is said too literally (misses undertones of humor, irony, and sarcasm)
Children with autism spectrum disorders have difficulty with speech and language. Often, they start talking late.
Signs and symptoms of nonverbal communication difficulties in autism
- Avoids eye contact
- Uses facial expressions that don’t match what he or she is saying
- Doesn’t pick up on other people’s facial expressions, tone of voice, and gestures
- Makes very few gestures (such as pointing). May come across as cold or “robot-like.”
- Reacts unusually to sights, smells, textures, and sounds. May be especially sensitive to loud noises.
- Abnormal posture, clumsiness, or eccentric ways of moving (e.g. walking exclusively on tiptoe)
Children with autism spectrum disorders have trouble picking up on subtle nonverbal cues and using body language. This makes the “give-and-take” of social interaction very difficult.
Signs and symptoms of inflexibility in autism
- Follows a rigid routine (e.g. insists on taking a specific route to school)
- Has difficulty adapting to any changes in schedule or environment (e.g. throws a tantrum if the furniture is rearranged or bedtime is at a different time than usual)
- Unusual attachments to toys or strange objects such as keys, light switches, or rubber bands
- Obsessively lines things up or arranges them in a certain order
- Preoccupation with a narrow topic of interest, often involving numbers or symbols (e.g. memorizing and reciting facts about maps, train schedules, or sports statistics)
- Spends long periods of time arranging toys in specific ways, watching moving objects such as a ceiling fan, or focusing on one specific part of an object such as the wheels of a toy car
- Repeats the same actions or movements over and over again, such as flapping hands, rocking, or twirling (known as self-stimulatory behavior, or “stimming”). Some researchers and clinicians believe that these behaviors may soothe children with autism more than stimulate them.
Children with autism spectrum disorders are often restricted, inflexible, and even obsessive in their behaviors, activities, and interests.
When a child is first diagnosed withautism, parents often scramble to find appropriate autism services, doctors, schools and therapists. What we don’t always anticipate is that relationships with friends, family and neighbors often change. Some will stand by our side, doing what they can to help and embrace our child no matter the diagnosis. However, some people will either sit quietly on the sidelines or abandon the relationship altogether.
So what happens when you find out that your friend, family member or neighbor has a child who has been diagnosed with autism? How can you help your friend? How can you help their child? There are many ways you can assist a friend from talking to offering a playdate. Here are 10 things you can do to help a family whose child has been diagnosed with autism:
1. Being There
It sounds easy enough, but parents of children with autism need someone to listen and ask how they are doing. As a friend, you may not understand all the autism jargon, but moms and dads who have kids with autism often want to talk about their kids.
What can happen, however, is that the diagnosis of autism pushes us and our kids into isolation. It isn’t like we want to be isolated, but we are sometimes so busy with autism related activities and therapy, it does not leave much time for anything else. Offering to come over for a cup of coffee or to get together just to talk can be one of the best ways to help your friend get out of his/her autism bubble and combat the isolation.
2. Discussing Autism
To talk about autism or to not to talk about autism?…That is the question. The answer is “It depends.” Most parents who have kids on the spectrum are more than willing to talk about autism. But there are parents who do not want to disclose the diagnosis, talk about autism at all or how it affects their child. Some parents may be in denial about the diagnosis and will not even want to say the “A” word let alone discuss the topic.
So if you are a friend, what do you do? Let your friend bring up the topic of autism, and do ask how the child is doing. Even if a friend does not use the “A” word, he/she will appreciate you asking how their child is doing in general… without ever discussing autism. If your friend is open about the diagnosis, showing interest in their child and the topic of autism is certainly appropriate. Because we never take progress for granted, parents who have kids with special needs are proud of their children’s smallest accomplishments. To know that friends care about our kids makes sharing these times all the more special.
3. What Does a Child With Autism Look Like?
Seems like a strange question. But I know that there have been times when a person has met my son and then makes a comment such as, “He doesn’t seem like he has autism.” or “He doesn’t look like he has autism.” The interesting thing is that there is no “look” to autism. Yes, some of our kids may have similar behavioral or social characteristics, but they are all very different. So this is why if someone tells me they have experience in autism, that doesn’t mean they will know or understand my child.
If you do know, watch or teach another child with autism, it is best not to compare what you know to the child you are meeting. Also, I would refrain from telling your friend about how you think autism should “look”. Being open to learning the hallmarks of autism is important, but learning about the individuality of each child who has autism is the best approach.
Sometimes it is a difficult concept to explain to others how autism is different in each child. But as a parent, when your child has 10 friends with Aspergers, you can see easily how they are all very unique with their own talents and interests.
If you had asked me when Tyler was diagnosed at age 2 where he would be in 12 years, I could not have told you or predicted the outcome…nor could the doctors. Many times people will ask us, “What the prognosis?”, “Will he grow out of the autism?” or “Will he go to college?” The truth for many of us is that we don’t know our child’s prognosis, and the topic can be a sensitive subject. Because we don’t know what will happen, the future can be a scary, unknown.
Unlike parents of typical children, who plan for college or vocational schooling, we often do not know where our kids will be academically, socially or behaviorally when they become young adults. Can we plan for the future? Yes, but we go into it accepting the unknown variables as we plan. Our child’s future may or may not include college or further schooling. We often don’t know whether our child will ever be independent enough to live on their own. We hope for independence, but the reality for the future may include living at a group home or our child may need to live with us for the rest of our lives.
Many of us worry about what would happen to our child if something happened to us. This too, is difficult. So, if your friend brings up the topic of prognosis, then you should discuss it. But just be aware that some parents will not want to talk about this issue.
Lately there has been a lot of autism awareness stories in the news. As a parent of a child with autism, I do appreciate friends and family sending me information they read. If you have a friend who is open about discussing autism, sending something you read is a fine way to show you care. Just because we have a child with autism does not mean we necessarily know every latest thing that is going on in the autism world.
The only caveat I would mention in this area is that parents don’t always agree about autism treatments or causes. As a result, parents sometimes react strongly to studies, articles, etc.. So my advise would be to go easy. If a friend seems receptive to new information, feel free to send it but never push too hard.
6. Playdates with Friends
I can remember when my son was first diagnosed, and my friends also had children Tyler’s age. What my son really needed was to be around other typical children. However, some friends acted like somehow autism was contagious and did not want their child playing with mine. I can remember a good friend’s husband expressing his displeasure with my son and his autism. After that, I never went out of my way to get our kids together, because I felt her husband didn’t want my son around her children. It was a rude awakening about how some people accept our kids and some people clearly do not.
So what can you do? If you have a friend who has a child with autism, invite her and her kids over for play time. Will it be typical playdate? Maybe yes…maybe no depending on the children. Even if the playdate is a little out of the ordinary, it will offer the kids with autism an opportunity to learn typical social behaviors/skills from other children. For the typical kids, the playdate may provide a lesson in acceptance and tolerance of people who are different from them. Acceptance is a lesson that is learned best by doing, so your children will benefit as well. It can be of great experience for both families.
7. Playdates with Neighbors
When it comes to autism, being a good neighbor means more than keeping your yard clean and sharing a cup of sugar. If you have a child the same age as your neighbor’s, invite them over for playtime. You may want to invite the parent and the child over for the playdate so you can learn how the autism affects individual child and how to help the kids play together.
It is important to note that many children with autism have difficulty creating and maintaining friendships, engaging in conversation and/or working within a group of children. This means that you may need to help facilitate the friendship and communication between your child and the child with autism. Also, many of our kids do better within a structured environment. Creating a well organized playdate with specific activities may help both kids enjoy their time together.
8. Help with Respite
Whether the child is a toddler, adolescent or adult with autism, respite is often a complicated issue for parents. Many parents who have children with disabilities are overwhelmed with the day to day responsibilities. Some children on the spectrum do not sleep well during the night and that further adds to the exhaustion.
However, when you have a child with special needs; it can be difficult to find someone you trust to watch your child. For example, I could easily find a teen babysitter in our neighborhood to watch my 4 years old, neurotypical daughter. But when my son with autism was her age, there was no way an untrained teenager would have been able to babysit him. My son only spoke a few words at the time and had many behavioral issues, so I only could trust my parents or another adult to watch him.
So what does this mean if you are a friend or family member? An offer to provide brief respite from a trusted friend or family member who knows how to appropriately interact with the child with autism would be great. Whether it be one hour or a night, any offer would be a gift for a friend in need. It seems like a simple favor, but it can mean everything to an overwhelmed parent to have a few hours to go grocery shopping or to just spend some alone time with their spouse.
9. Don’t Judge
Whether it is a disapproving stare in a grocery store or comments from a family member about how we need to “better discipline our child”, most parents who have a child with autism been subject to judgment from others. Considering that we live our life in a fishbowl, with countless therapists in our home and never ending doctors appointments, we often grow weary of “advice” from those who do not have a child with autism. No matter how much you think your criticism is constructive, be aware that expressing it may easily break off or damage your relationship.
Until you walk a mile in our shoes, you will never know what is like to have a child with autism. Most of us instinctively know that we should not judge others, but it can happen easily. And once it happens, it may be hard to reverse the damage.
Some parents, like me, are very open about talking about their children and the diagnosis. But some parents may not want to discuss autism except perhaps with a close friend or family member. And on the far end of the acceptance scale, some parents may be in denial about the diagnosis and won’t discuss the issue with anyone.
But regardless of how much we discuss our kids or autism, we do expect confidentiality. Just because we open up to a friend does not mean we want our friends or family telling others about our children or any issues we are having at the moment. Confidentiality is especially important to a parent who has chosen not to disclose their child’s diagnosis to others . While it seems like common sense not to gossip about other people’s children, it is worth mentioning that if we tell you something, please keep it in confidence unless you have the permission of the parent to share this information with others.
The Bottom Line
In your lifetime, you will probably know more people and families affected by autism. You can choose be part of the solution by helping support a friend, family member or neighbor. Take the time to learn not just about autism, but the individual child. Make the decision to accept children with disabilities and teach your children how they can help children with autism by being a friend too.
If there is one thing I learned about friendship after my son was diagnosed with autism, it is that it can be very fragile. Being a friend during good times is easy. Yet it is during the difficult times that we learn who our real friends are. I am forever grateful to those friends and family members who supported our family after the diagnosis. They made a choice to accept my son for who he is and help us in any way they could. Making the choice to support a family affected by autism is one of the greatest gifts you can give. It is also very likely that your act of kindness may turn out to be one of the greatest gifts you receive back as well.