A child’s autism diagnosis can cause a lot of emotional turmoil in parents. Most people have absorbed pop culture’s stereotypes of how people with autism behave. While there can be some truth to them, they are often overly negative and even stigmatizing. That’s why most parents with special needs children can benefit from developing a better understanding of the disorder and thus improving their relationship with their child. Special needs programs and resources can help. But first, it’s important to understand the previous and current classification of autism.
Previous Autism Spectrum Disorder Terminology
Up to 2013, psychologists classified Autism Spectrum Disorder into the five categories below. Although the diagnostic criteria have been changed for a while, you may still come across some of these terms. For instance, some people with autism who were diagnosed prior to 2013 may still identify as having Asperger’s syndrome — their original diagnosis. Thus, it’s a good idea to familiarize yourself with the terminology.
Asperger’s Syndrome
Asperger’s used to be a common diagnosis. It was used to refer to so-called ‘mild’ autism. For instance, a person with Asperger’s may have some difficulties with communication but they can still manage to function independently in most contexts. As Asperger’s traits are different from ‘general’ autism only in severity, not in nature, this diagnosis is no longer in use.
Childhood Disintegrative Disorder (CDD)
Also known as Heller’s syndrome, this condition is characterized by normal child development up to age 3 or 4. At that point, children quickly lose a range of motor, social, and language skills they’ve already acquired. CDD is no longer an independent diagnosis and it’s currently considered to fall within the umbrella of Autism Spectrum Disorder.
Kanner’s Syndrome
Kanner syndrome’s presentation is the closest you can get to the stereotypical image of a child with autism. These kids struggle with both verbal and non-verbal communication and avoid eye contact. They often need a strict routine and have a narrow range of interests. Kanner’s syndrome is no longer used to diagnose people.
Pervasive Developmental Disorder – Not Otherwise Specified (PDD-NOS)
Many delays in speech and communication skills used to be diagnosed with PDD-NOS. As there’s a lot of overlap with autism, this disorder is no longer in use.
Rett Syndrome
While Rett Syndrome can share some similarities with Autism Spectrum Disorder, it’s no longer considered to be a part of the spectrum. It features several key syndromes that aren’t typically associated with autism, such as impaired mobility and irregular breathing.
New Autism Spectrum Disorder Classifications
There were several issues with the previous classification system, which eventually led to it being changed. Many children and adults had symptoms that couldn’t neatly fit into a single subtype, which made diagnosis a challenge. To prevent further confusion, the American Psychological Association announced that all previous subtypes fall under the umbrella diagnosis of Autism. Today, professionals categorize autism symptoms based on the level of support they require. There are three main subtypes:
ASD Level 1
This is the lowest level classification, which means that people within ASD Level 1 require the least support. They may need some assistance with managing social interaction or have some difficulties managing their daily lives but are mostly self-sufficient.
ASD Level 2
People within this level have more significant issues with social interaction. They may exhibit repetitive behaviors, have restrictive interests, or struggle with verbal communication.
ASD Level 3
Adults and children within ASD Level 3 need substantial support. They may have a very limited capacity to take care of themselves and take part in social interactions. Most people within this level need daily support in order to maintain a reasonable standard of living.
How Does Autism Affect Families?
Whether a child’s symptoms are on the milder or the more severe side, their family life is bound to look different from that of a fully neurotypical household. Research has shown that having children with special needs such as autism can affect family, social, and financial life.
Emotional Effects
In terms of emotional impact, parents may struggle with adjusting their expectations to the reality of their child’s experience. For example, a mother may have had daydreams about her child’s potential future career or having grandchildren. Family outings may need special attention. Parents may need to make adjustments to the itinerary or opt not to go to certain destinations that may be too overwhelming for the child with autism. On top of that, many parents feel guilty about their feelings of disappointment, as they judge them to be shallow or unfair to their child. Although it is necessary to adjust expectations, going through a grieving period before letting go of unrealistic expectations can be a necessary and healing experience.
Effect of Familial Bonds
Each family member has individual relationships with everyone else. Adding stress, such as an autism diagnosis, can strain all family relationships. For example, parents can each have complex feelings about their child’s diagnosis and they may both find it challenging to discuss the topic. If their child needs substantial support, they may not have enough free time to spend together and bond as a couple, which in turn can strain their romantic relationship. Siblings, on the other hand, may feel like they’re receiving much less parental attention and feel neglected. They may come to feel resentful of their special needs sibling. Although all these feelings may be negative, they should not be avoided and can be worked through. Over time, these early challenges can strengthen the bonds between all family members and build trust, improve communication, and increase interdependence.
Effect on the Child with Autism
Many special needs families struggle to adjust to a child receiving an autism diagnosis. Even experienced parents may feel at a loss, as the parenting techniques they’re used to don’t fit their current situation. As a result, they may struggle to nurture and support their special needs child.
A key challenge here is to understand and work with the child’s subjective experience of the world. Some may try to force the child to appear normal or to try to get them to act in accordance to standard child development timelines. Although these desires can be understandable, acting on them is not the best course of action, as taking the child’s unique needs into account typically leads to better results.
Family Development Resources for Parents
Families who struggle are best suited to exploring resources that focus specifically on special needs children. A psychologically-informed program can give parents a much more sophisticated understanding of how their child’s brain processes information and external stimuli. In turn, this can lessen the emotional challenges of special needs parenting and increase empathy, both toward their child and towards other family members. They can also learn a range of techniques to better regulate their emotional responses toward their child. Finally, special needs programs give families access to qualified facilitators and mental health professionals, who can be valuable sources of support.
We created our product, A Family’s Guide to Autism Spectrum Disorder, as a companion guide to our special needs programs. Parents can use it to improve their relationship with their special needs child, learn to handle challenging behaviors, and improve the well-being of the entire family.
Resources for Facilitators
We at Nurturing Parenting offer special needs programs and other resources to those who work with special needs children and their families. We aim to strengthen each family’s weaknesses and areas in need of improvement. Our Special Needs & Health Challenges – Facilitators Activities Manual for Children (HCAMC) contains a range of straightforward and developmentally-appropriate activities.
Family Development Resources provides many more resources for families and facilitators to improve lives and relationships. Please visit our products, research reports, and training resources for additional resources and information. Contact us if you have questions.