All parents experience stress related to the usual worries and tasks associated with raising a child. Unfortunately, along with the usual struggles with childhood illnesses, the rigors of school work, and the drama of childhood friendships, parents with children on the autism spectrum experience extra levels of stress and concern.
Parents with children diagnosed with autism spectrum disorder (ASD) experience all of the stresses associated with having a child who struggles with special challenges.
However, research indicates that parents with a child diagnosed with ASD experience a special level of stress that is more than the stress experienced by parents of children diagnosed with Downs Syndrome.
The added stress experienced by parents of children on the autism spectrum comes from:
- The stigma of having a child with a visually invisible disorder. No parent of a child diagnosed with ASD has avoided the wilting glances and rude responses made by people who are unable to understand that their child’s behavior is not the result of poor parenting skills.
- The self-injurious behaviors that many children on the autism spectrum exhibit. Repetitive behaviors like headbanging are not only dangerous to a child but are heartbreaking for a parent to witness.
- The issues associated with poor sleeping patterns and picky eating habits many children diagnosed with ASD struggle with. A child’s sleepless nights generally impact the whole family but at best they impact the primary caregiver. Likewise, picky eating often requires more effort and time to accommodate than feeding a child who can happily eat a wide variety of foods.
- The financial problems associated with the challenges of raising a child diagnosed with ASD. Frequently one or both parents of a child with ASD will find that they need to take time from work to provide support to their child. Parents often must take time away from work to participate in appointments with specialists that support their child.
- The development disorder, limited social skills and communication, and other symptoms of autism that come along with a child on the autism spectrum.
As with any diagnosis that results in increased stress levels, financial challenges, and endless commitments to meetings and appointments, parents of children diagnosed with ASD often hope for a cure.
A cure implies that the continuous work of complying with treatments and interventions can be ended once and for all. Although this may seem like a good goal for any issue that limits a child, it is seen as offensive to many people who work with, live with, and love those who are diagnosed with an autism spectrum disorder.
What is autism?
Autism Spectrum Disorder (ASD) is a disorder associated with deficits in social skills, communication abilities, and relationship skills. Individuals diagnosed with this disorder will also exhibit, or have previously exhibited, repetitive patterns of interests, behaviors, or activities from an early age. People diagnosed with ASD can vary in their abilities, thus the disorder is considered to exist on a continuum. Some people diagnosed with ASD will need considerable support in everyday life, while others will be identified as gifted in some areas.
ASD is often diagnosed early in a child’s life. Parents are generally the first to identify issues that their children are struggling with the disorder. They may notice any of a variety of signs that their child is struggling with ASD. These signs may include:
- Their child doesn’t make eye contact when talking to them. Most people will make eye contact when communicating with one another. We generally see young babies making prolonged eye contact when people talk to them. If your child doesn’t make eye contact it may be an early sign that something isn’t quite right.
- Their child doesn’t point to things of interest to them. Most children will point to attract your attention to an object if they have a question. However, children on the autism spectrum are unlikely to point to the object they are asking a question about or talking to you about. You may first discover this simply due to the fact that you are often uncertain of what object your child is talking about.
- Their child doesn’t look at an object when someone else points to it. If you notice that your child doesn’t turn to look at objects that are pointed out to them, you may want to explore the reason why.
- Their child doesn’t seem to understand other people’s feelings. Children diagnosed with ASD are often viewed as rude due to their inability to understand the way that their words or behaviors impact others. If you notice that your child behaves in ways that seem careless of the feelings of others, you may want to explore further.
- Their child doesn’t talk about their feelings. If your child doesn’t talk about their feelings, particularly when you see behaviors that look like they are the result of strong emotions like anger, you may wish to look into this further.
- Their child doesn’t respond when people talk to them but will respond to other noises. Children on the autism spectrum often experience a hypersensitivity to noise. If you notice that your child has no difficulty hearing but does not seem to take in, or respond to, voices, you may wish to look into this further.
- Their child doesn’t like to be cuddled or hugged. Children on the autism spectrum often dislike cuddling. If your child seems to avoid cuddling, or only wishes to cuddle at specific times, this could be a clue that they are struggling with symptoms of ASD.
- Their child repeats the same behaviors or phrases and words over and over. For example a child with ASD may mimic a phrase or repeat what others say like an echo. If rather than communicating in an appropriate way, you notice that your child is repeating your words or using a standard set of words frequently, you may wish to explore further.
- Their child doesn’t engage in pretend play. Children on the autism spectrum may spend a great deal of time setting toys in a specific order, but they may not engage in play that requires imagination. For example, a child with ASD may set their dolls up in an ordered line but will not play at feeding or caring for them.
- Their child may show a great dislike for changes in their daily routine. Most children enjoy a break in their day to day routine. If, however, you notice that slight changes in daily routines upsets your child, you may wish to consider whether this could be a sign of something more.
- Their child may react more acutely to sounds, tastes, and the feeling of things like clothing than other children appear to. If your child displays difficulty tolerating things like new shoes, the seams in socks or clothing, tags in their clothes, or specific types of food, it could be an indication of hypersensitivity associated with ASD.
Can autism go away?
According to recent research, children can somewhat outgrow their diagnosis of ASD. However, research by Shulman, D’Agostino, & Lee indicates that many of these children will continue to need some type of early intervention such as therapeutic or educational support.
While full recovery from a diagnosis of ASD may not be possible, there are many ways that parents can help their child to live with the effects of their autism diagnosis. Parents can help their child diagnosed with ASD to thrive by:
- Developing structure and safety in their child’s life. Safety is often an issue for children on the autism spectrum. Establishing a safe space for your child to go when feeling overwhelmed supports their feelings of safety and security while limiting the possibility to the child harming themselves.
- Signing your child up for ABA therapy. Applied Behavior Analysis therapy give your child the skills so that they can live more independent lives and participate in their communities
- Connecting in non-verbal ways. Learning functional communication skills allows you to engage your child in a way that is beneficial to you both. Learning to use alternatives to verbal communication, be that sign language, bodily gestures, or pictures will help you to engage with your child on a level that you may not have previously been able to. Finding a way to communicate with your child will support your relationship and improve both your child’s sense of belonging and your confidence as a parent.
- Finding help and support. There are many professionals, organizations, and groups that can help you find information, treatment options, services, and a sense of community. The more support you and your child have, the better you will be able to limit your feelings of stress and find your way to enjoying the special relationship you have with your child.
Does autism worsen with age?
Longitudinal studies have found that about 10% of children diagnosed with ASD show a dramatic improvement by the time they reach their mid-teens. The proportion of children who show marked improvement tend to improve their verbal skills early on and have a high initial verbal intelligence quotient. These research findings may have significant implications for identifying what skills to help your child focus on improving today.
Indeed, research indicates that children whose parents are engaged in their treatment early on show better verbal and daily living skills in their teen years. However, the improvement that many people see in their teen years tends to stop as they transition out of the school environment.
This may be explained by two specific events that occur at this time in a child’s life. First, the teen is leaving the structure of the educational environment which many individuals find highly beneficial. Second, many individuals on the autism spectrum lose access to support when they reach adulthood. You may find support in community agencies and higher education supports to help fill this space as your child transitions out of the child support system.
Although many individuals will see a reduction in their ASD symptoms in their teen and early adult years, research indicates that in old age individuals who have an autism diagnosis may see a reduction in their ability to function. In old age, these individuals may show decreased interest or understanding of how their behavior impacts others and their ability to function well may decrease back to childhood levels.
Is mild autism reversible?
As stated previously, there is currently no known cure for ASD. However, research indicates that symptoms of the disorder can be reduced through the use of behavioral therapy and other treatments. For individuals who exhibit mild symptoms or high functioning autism, it is possible to control the symptoms that create difficulty for them.
Interventions, especially early intervention, for issues associated with speech and behavior like speech therapy, occupational therapy, and behavioral therapy can help individuals with mild symptoms of ASD develop skills that allow them to improve their functioning to the point where they may no longer meet clinical criteria for the autism diagnosis. Older children may be able to control some of their symptoms through the use of medication.
Likewise, medical treatment for many of the symptoms associated with ASD can be medically treated in adolescents. Adolescents who exhibit symptoms similar to those of attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), and oppositional defiance disorder (ODD) may be prescribed medication that can help them control these symptoms.
Does autism run in families?
Autism is known to run in families. However, heredity does not completely explain who will develop ASD. According to the Autism Society, individuals who have a genetic vulnerability are more apt to develop ASD than those without such genetic issues. Exposure to harmful substances during the mother’s pregnancy and certain medical conditions are also more likely to result in a diagnosis of ASD.
The latest research to help autism
It can be very difficult to get a clear picture of the best ways to support individuals diagnosed with ASD by searching the research. Recent research studies look at a wide variety of elements. Much research focuses on single cases or low sample sizes making it difficult to determine the overall importance of specific strategies. There is also difficulty comparing studies as many studies focus on the improvement of a specific skill.
However, there is always research being performed on aspects of ASD as it impacts so many members of our society. Some of the recent research findings include the use of brain imaging and larger sample sizes. Some of the best recent research findings are provided below.
The National Institute for Health funded a 2019 study that found a connection between the cerebellum of rodents and their ability to process rewards and social behaviors. It is believed that this finding will help to deepen the scientific understanding of how the brain works in those diagnosed with a variety of conditions including ASD, as abnormalities in the cerebellum have been previously linked to ASD. Scientists are interested in seeing if in[uts to the cerebellar neurons could impact social behaviors.
In a 2018 study on neurofeedback, it was shown that children diagnosed with ASD who received neurofeedback while playing a picture puzzled game exhibited spontaneous activation of their social brain circuitry. These findings were seen in the functional magnetic resonance imaging (fMRI) scans of the participants. The findings were further supported by the parental reports of improved social behaviors among the children in the study. These findings imply that covert neurofeedback may have potential as an intervention for those diagnosed with ASD.
In other research studies it was found that an individual’s guts may play a role in the development of ASD. Though the reported study had a very limited sample size (18), researchers indicated that there was a 45% reduction in ASD symptoms in the study’s participants. A 2020 study of children 3-6 found that children treated with bumetanide showed improvement on the Childhood Autism Rating Scale when compared to the control group.
A 2017 study found that functional connectivity magnetic resonance imaging (fcMRI) may help predict the risk of children as young as 6 months in developing ASD by the age of 2. This finding is consistent with the belief that changes occur in the brain of a child before behavioral changes are seen. Such early detection could support early diagnosis and interventions thereby improving the outcomes for children at risk of developing ASD.