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What is it like living with a child who has autism?
“There are always flowers for those who want to see them.” (Henry Matisse)
Perspective is a tricky concept. The concept of normalcy varies widely from person to person because everyone experiences life in a unique way. Some of us have families with one parent; some families have two parents. Some families are wealthy and other families live from paycheck to paycheck. Some children grow up with siblings, step siblings or with extended family members. Other children grow up with hard working parents that have to utilize day care while others have mothers and fathers who alternate caring for their children at home as they work opposite shifts.
What family dynamic is “normal”?
In the same way, children with autism are as unique and varied as individual perspectives. The very reason for calling autism a spectrum disorder is that autism has so many unique ways of presenting itself in a person. There is no “normal” presentation of autism just as there is no “normal” family dynamic. Which leads us to the question:
Can a child with autism lead a normal life?
The best place to get an answer to this question is to ask someone who has autism . Overwhelmingly, adolescents and adults with autism who are asked this question are content, optimistic and grateful for the life that they have. It is unlikely that any of these people had the same dynamics as they went to school and matured into adulthood. It is more likely that these people simply have a healthy perspective of themselves, their abilities and their future plans.
As a parent of a child with autism, this optimistic vision of the future does not necessarily make it any easier as you are raising a child on the spectrum. Your perspective as a parent can be filled with worry and anxiety over your child’s future. You may experience frustration and sadness on days when your child’s behaviors or difficulty with communication are problematic. It is “normal” to feel this way when you are raising and living with someone on the spectrum.
Changing your perspective can help alleviate some of the frustration, sadness and difficulty in raising a child with autism. What if you began to view your child’s deficits as a different way of thinking rather than a disability? Or, what if you began to respond differently to tantrums because you understand that your child is just trying to communicate with you? What if you understood stubborn defiance as your child’s attempt to do something independently?
What behaviors or difficulties can you try to see in another light? How can you change your perspective so that you can reduce some of that anxiety, sadness, frustration or anger at the trials that you may experience while you are raising a child with autism?
A child with autism can and will live a “normal” life.
The definition of normal will vary from person to person depending on the severity of the autism. Some children with high functioning autism will grow up to be independent and hard working adults that rarely show any sign of their diagnosis. Others may appear atypical, yet still become independent and self fulfilled adults. Many of these people will go to college, get married, raise a family and live happily. Some may not accomplish everything that their peers accomplish, but their perspective on life can be just as cheerful and fulfilling nonetheless.
Perspective is a funny thing. The way that you teach and present things to a child with autism in their formative years has a lot to do with how well these children handle life as adults.
How do you bond with an autistic child?
Bonding with a child who has autism poses some unique challenges for reasons that may not seem obvious. A child with autism wants and desires the attachment to a parent or caregiver- they just might not be able to express it verbally, physically or even by facial expressions.
For example, a child with severe autism might rock back and forth and make sounds when they are seeking physical closeness with a parent or caregiver. It might be the only way for the child to express this particular need until they are able to communicate in a more practical form- such as PECS (Picture Exchange Communication System) or sign language.
On the other hand, you may have a child with high functioning autism that has meltdowns because they have difficulty with understanding their own emotional stirrings for affection or communication. They may feel a need, but can’t quite identify exactly what it is that they are in need of at that moment.
It is up to parents, caregivers, therapists, teachers and whoever is in close proximity to this child each day, to learn the signals that the child uses to express their needs. Even when a caregiver learns the signals, the affection or communication may not be reciprocated. Yet, it was still the attention and closeness that the child was seeking.
It is important to remember that the responses from children with autism may or may not display the same reactions as a typical child. It may be hard to know if your attempts to bond or communicate are actually reaching them.
Despite their atypical responses to affection or communication there are some practical suggestions for parents and caregivers that will help to strengthen the bond between you and your child.
- Don’t assume how your child is feeling: Lack of eye contact, minimal verbal response, inattention, and a flat tone to their speech could easily be misinterpreted as disinterest when in fact your child is processing everything around them and truly enjoying themselves. Communicate as you would with a typical child and ask, “are you having fun?” or “do you want to play on the slide?”. Being spoken to is how your child will begin to learn to communicate.
- Teach them imaginary play: Children with autism have a hard time with initiating play and creating scenarios while they play. Take the initiative and ask them to play. Role-play familiar situations like mom, dad and baby going to the store. Ask them what to look for at the grocery store: “do we need milk?” “ what should we make for dinner?” Model the conversations and talk through everything so that they can observe and learn.
- Focus on what interests your child: If your child loves cars, teach them by using cars at the center of everything. Concepts like forward, backward, fast, slow, colors and size can all be taught using cars. As they grow, you can still use their interests and expand the concepts. For example- how much is ten gallons of gas if the gas is $3.15 per gallon? Use those interests and expand on them when you can. Introduce new interests in small doses along the way and try to help them with a little flexibility.
- Expose them to social settings and new people: Children with autism spend a lot of time with mom and female teachers. Try to make a concerted effort to surround your child with people from all walks of life. Visit a home for the elderly. Try taking a class with a male instructor- gymnastics, martial arts, yoga. Go to museums, libraries and pet stores. Try to expose them to other languages by playing music from other cultures, or playing near a family at the park that is speaking another language. Talk about everything that they observe later at bedtime. Pick out a book about people who enjoy different hobbies, enjoy different careers, or come from other cultures. They may find new interests by being presented with new ideas.
- Cuddle and spend time enjoying what they like: If your child enjoys a certain movie or type of music- sit with them and enjoy it with them. Then share some of your favorite things.
- Praise them often: Even if your child doesn’t respond outwardly, just assume that they are taking in all of your pride and praise. Get excited, hug them and squeeze them and tell them how awesome they are when they accomplish something.
- Say I Love You- often: Everyone wants to feel loved and your child with autism is no exception- which brings us to the next question.
Can an autistic child feel love?
Children with autism can absolutely feel love. Humans are naturally inclined to be near other people and be in relationship with those closest to them. People on the autism spectrum are no exception. Just because people with autism have difficulty with emotional expression does not mean that they do not have a need for bonding with others. In fact, many children with autism have a greater need for love and affection and require an extraordinary amount of hugging and squeezing to help calm their anxiety.
A child with autism who does not show outward displays of affection needs just as much love and affection as any other child. They simply have difficulty expressing the need and responding appropriately to it. Give them a continuous dose of love and affection and teach them how to reciprocate.
As children with autism grow into adulthood, they are just as likely to want to find a life partner and soul mate as the rest of us. Many people with autism get married and have a family. It isn’t necessarily easy for either person in the marriage. People who marry a person with autism can tend to feel hurt or lonely if they don’t have a thorough understanding of the emotional nuances that come with autism. Partners of those who are on the spectrum can find themselves in harmony with their spouse on one day with great conversation and hand holding and the very next day they may find themselves feeling alone and confused. People on the spectrum can go from talkative and elated to silent and introspective and wanting to be alone in a matter of seconds. The marriages that succeed for those on the spectrum have partners who are aware of the emotional hills and valleys and they are intuitive about when those hills and valleys occur. It takes support and understanding to make this type of union work.
Does autism run in families?
Years of researching autism has only revealed one consistent trend. Autism does tend to run in families . JAMA (a renowned psychiatric journal) published an article in 2019 that revealed the heritability of ASDs (autistic spectrum disorders) to be as high as 80%.
In ABA services, it is not uncommon to serve families who have more than one child on the spectrum. It is also not uncommon to see observable traits in close family members. As research continues, it appears that everything that is known about autism and genetics seems to suggest that it is passed to children by their fathers.
“The scientists then examined whether structural variants in these regions were associated with autism by examining the pattern of transmission from parents to their autistic and nonautistic children…The team found that mothers passed only half of their structural variants on to their autistic children—a frequency that would be expected by chance alone—suggesting that variants inherited from mothers were not associated with autism. But surprisingly, fathers did pass on substantially more than 50% of their variants. This suggests that autistic children might have inherited risk variants in regulatory regions from their fathers but not their mothers, the researchers report today in Science .”
What does this information mean to families of children who have autism? There is no cure for autism but knowing that there is a genetic tendency for autism can help a family to make more informed choices about planning a family and it might help to plan ahead financially for such an occurrence in the family. Supporting continued research in genetics may help to facilitate a cure as we learn more about the causes and successful treatments of ASDs.
Does autism worsen with age?
Autism can worsen with age if left untreated or if the autism is coupled with mental retardation. The key to all disabilities is early intervention. It is crucial to seek treatment at the very first opportunity after a diagnosis of autism.
The goal for early intervention is to equip the child with autism to learn and to reduce the severity of the symptoms that the child displays. It is also the goal of early intervention to equip the families of children on the spectrum to know how to help their child learn and generalize what they learn from one setting to another. For example, learning how to sit still at home during therapy should be practiced in school, in restaurants, in doctor’s offices or wherever necessary. Parents and caregivers are important teachers to their children as they learn these skills.
Living with a child who has autism does not need to feel like a heavy burden. All families have good days and bad days and it is no different with a child who has autism in the family. The earlier that your child is diagnosed and treated, the more likely that your child will outgrow many of their symptoms. Many children with autism learn so quickly that they are indistinguishable from their peers by the time they reach middle school or high school.
A child with autism becomes an adult with autism who has all of the same needs and wants as any other person. The biggest difference in the outcome for you child in their adult years will rely upon the help that they received when they were younger.
If you live in New Jersey- Circle Care is an ABA agency that strongly advocates for early intervention for children with autism. Our qualified staff excels at teaching social skills, increasing appropriate behavior, decreasing inappropriate behavior, effective communication and all of the necessary skills and tasks that a child needs from day to day. Early intervention helps to make living with a child who has autism much easier by teaching your child and supporting you as their parent or caregiver. Give us a call so that we can help you and your family live in harmony with autism.