Autism spectrum disorders and a counselor’s role
June 2, 2021
According to the CDC, Autism Spectrum Disorders (ASDs) have been on the rise from 1 in 150 children diagnosed in 2000 to 1 in 54 as of 2016. This significant increase urges us to consider the effect on families. Even though there is more known about ASDs than in years past, autism remains a lifelong condition with both challenges and rewards. As the numbers rise, more families will need additional support.
What is an Autism Spectrum Disorder?
Autism Spectrum Disorders, according to the American Psychiatric Association (2013), are characterized by symptoms such as persistent deficits in social communication and interaction, social-emotional connections, and non-verbal communication. Most symptoms begin to appear around 2 or 3 years old and children can be diagnosed as early as 18 months (APA, 2013). Previously, in the Diagnostic and Statistical Manual (DSM) of Mental Disorders 4th ed., autism was divided into 5 categories: Pervasive Developmental Disorder Not Otherwise Specified, Asperger’s, Rhetts Syndrome, Autistic Disorder and Childhood Disintegrative Disorder. However, when the American Psychiatric Association (2013) published the 5th edition of the DSM, autism was revealed to be evaluated on a spectrum:
- Level 1: Requiring support. Difficulty initiating social interactions, atypical or unresponsive to others, decreased interest in social interactions, inflexible behavior and difficulty switching from one task to another.
- Level 2: Requiring substantial support. Deficits in verbal and nonverbal communication, social impairments, limited social interaction or initiation, difficulty coping with change, observable restricted or repetitive behaviors and distress when changing focus or action.
- Level 3: Requiring very substantial support. Severe deficits in verbal and nonverbal communication, extremely limited social interaction or initiation, minimal responses to social interactions, extreme difficulty coping with change, restricted or repetitive behaviors that interfere with daily functioning and high distress when changing focus or action.
Autism is a particularly unique disorder because each individual on the spectrum has similar but differing symptoms. An individual with an ASD can present with restricted or repetitive motor movements, be inflexible to routine changes, have restricted or fixed interests and be overwhelmed by sensory issues. Currently, there is no known cure nor specific factor that causes autism. There are a few risk factors that increase the chance of an ASD such parent age, genetic mutations, pregnancy or birthing complications and if pregnancies are spaced less than a year apart (Autism Speaks, n.d.).
It is not uncommon for an Autism Spectrum Disorder to co-occur with one or more mental health disorders such as obsessive-compulsive disorders, eating disorders, anxiety disorders, depressive disorders, and so on. ASDs are also diagnosed 4 times more often in males (APA, 2013). Luckily, children are now being diagnosed earlier, but it is not uncommon to meet an adult who has recently been diagnosed with autism. Fortunately, as more knowledge circulates about ASDs, early interventions are more and more common.
An early diagnosis of autism is also beneficial because parents can then begin to utilize the needed resources. Once a child is diagnosed, early interventions can begin such as speech therapy, behavioral therapy, neurological assessments and Individualized Education Plans (IEPs). Early intervention is extremely important as most treatment plans do not last past early adulthood. Unfortunately, current resources and funding for autism usually ends at age 21 or 22.
Raising a child with autism is no easy task. The impact of autism on a family is felt long before the diagnosis as parents begin observing their child’s early behavior. What’s more, it can be extremely costly, especially when paying for services not covered by insurance. Annually, Americans with an autistic family member spend $236-262 billion: $175-196 billion on adult services and $61-66 billion on child services (Autism Society, n.d.).
Early signs of an ASD
The importance of an early diagnosis cannot be emphasized enough when helping families. When a child is diagnosed later in life, it increases parental stress and delays the use of early interventions (Elder, et al., 2017). Children are diagnosed later because of doctors’ individual approaches to evaluation. Some doctors may confirm a diagnosis earlier, but many wait until the child is around 5 years old. Occasionally, doctors may misinterpret ASD symptoms as shyness and decide not to follow up with further testing (Elder, et al., 2017).
However, an ASD can be detected early via standard screening methods such as the Modified Checklist for Autism in Toddlers (MCHAT), the Autism Diagnostic Interview and the Autism Diagnostic Observational Schedule 2 (Elder, et al., 2017). Reducing the diagnostic age gap is essential to improve outcomes such as cognition and language development, development of adaptive behaviors, developing independent living skills and teaching social behaviors (Elder, et al., 2017).
Typically, parents first express concern when their child begins to display symptoms at age 2 or 3. It can be distressing for parents to watch their child develop normally and then suddenly begin to regress. This effect is magnified when parents are not knowledgeable of ASDs. Some of the symptoms that begin to appear include regression of speech, difficulty making eye contact, playing alone, having fixed interests, increased behavioral issues, hand flapping, walking on toes and a withdrawn affect.
Although finally receiving an ASD diagnosis can provide relief, it can also cause feelings of guilt and worry. Parents may feel they have caused their child’s autism, for example because of events during pregnancy. As a counselor, you can help normalize these feelings and provide education on the potential risk factors for autism. Creating a safe and non-judgmental space is vital for families to reach out for help.
Impact on the family
Parents with a child on the spectrum experience a host of unique stressors. Those on the spectrum have difficultly communicating their basic needs, which can leave parents feeling frustrated. As a result, the child’s needs are often unmet leading to behavioral outbursts towards themselves or others (Autism Society, n.d.). Compulsive and repetitive behaviors can interfere with daily functioning and learning.
Another unique stressor that families face comes when the child has additional health issues or disorders such as a sleeping disorder or dietary restrictions. Each child on the spectrum is unique and requires their own distinctive interventions. Some children may require alternative schooling, various therapies, additional treatment providers, medications or mobility devices. Families may have to travel or pay out of pocket for certain interventions and services. Overall, raising a child on the spectrum is expensive and can be financially overwhelming.
Research has shown that parents and family members can become overwhelmed with stress when they don’t get support. In addition, research has suggested that families of children with an ASD report more stress than families of children with other disabilities (Elder, et al., 2017). Due to the severity and unpredictability of ASD symptoms, families are left feeling unable to care for their child. One parent may stop working to care for their child full time or have to work multiple jobs to afford services. Taking care of a child with an ASD is a full-time job that impacts all aspects of life.
Going out in public can cause stress for families due to the unpredictability of ASD symptoms and the resulting comments made by strangers. For example, a child with autism may begin to yell if the music is too loud at the grocery store or make an inappropriate comment to a stranger. As a result, parents or other household members can feel isolated from their community, friends or relatives. Tension can also occur within relationships or marriages as a result of this additional stress.
Entrenched gender roles in some families can lead to the mother managing the majority of the care for the autistic child. Managing the household along with raising a child on the spectrum can be stressful to say the least. It is extremely difficult for parents to manage a healthy work-life balance in these situations.
Parents often struggle to connect with their ASD child. Counselors report that many mothers echo this painful experience, and the ASD child’s siblings are also affected. They may feel excluded when parents focus more on their sibling with autism. Siblings may also feel embarrassment over their sibling’s behavior in public places. Physical injuries from the child with autism may also be an obstacle for both siblings and parents.
Growing up with autism
As the child with autism ages, parents begin to worry about the future and who will look after their child. Parents may be concerned with the transition from high school into adulthood. A major challenge that has recently drawn more attention is the lack of resources for adults on the spectrum. Mental health professionals are finding it increasingly difficult to connect adults on the spectrum with appropriate services.
Transitions of all kinds are a challenge for those with autism, and without support or resources, their chances of success are low. Employment can be a major hurdle for those with an ASD and they are not alone— about 80-85% of individuals with a disability are unemployed. Those with an ASD may be unable to maintain a job due to lack of support or resources (Autism Speaks, n.d.) Autism is a lifelong condition that requires consistent and ongoing evaluation, planning and treatment over the course of the individual’s life.
A counselor’s role in supporting families
As a counselor, or prospective counselor, you can play an essential role for families as they navigate life with a child on the spectrum. When families first receive a diagnosis of autism, parents or siblings may experience feelings of guilt, embarrassment, grief or loss — and these are normal reactions. A counselor can help provide a safe space for families to explore and normalize these feelings.
Another way counselors can assist families is by providing psycho-education and resources regarding ASDs. Counselors can provide information on local providers who specialize in ASDs, the impact of autism on the family, local support groups and school resources. It is highly recommended to build a treatment team, which can include a behavioral therapist, an applied behavioral analysis therapist, a speech therapist, a medical doctor, a psychiatrist, a special education provider, a neurologist, a case manager, and so on.
If you are unable to treat ASDs due to lack of training or knowledge, you can refer your patient to other specialists. As counselors, we all have strengths and weaknesses and referring is sometimes needed to give families the best possible support.
Counseling is recommended for all family members in households with a child on the spectrum. To compliment this, parents and family members must prioritize self-care. Parents need time alone to decompress and time together to connect and siblings need one-on-one time with parents to feel seen and heard. It can be challenging to maintain self-care, and a schedule is useful to help keep these routines in place. As children with an ASD often responds well to routine, this practice helps everyone in the family.
Although there are several challenges to raising a child or with autism, the is also a bright side. As a counselor, you can help families focus on milestones, individual progress or funny moments. The unique, unforgettable moments are what make the journey of raising an individual on the spectrum well worth it.
The pandemic may have thrown us all a few curve balls, but we can still connect with and support one another. Working with individuals with autism and their families can be very rewarding. As a counselor, you can help parents feel hopeful and capable of helping their child. The autism community is known for its overwhelming strength and support. It is a place where families draw their strength and continue moving forward, blazing a path for those on the spectrum.