Raising a Child on the Autism Spectrum: The Impact on the Family

A diagnosis of Asperger’s (AS) or High-Functioning (HFA) not only changes the life of the youngster diagnosed, but also that of parents and siblings. Many moms and dads of an AS or HFA youngster must deal with a significant amount of stress related to expensive therapies and treatments, therapy schedules, home treatments, managing job responsibilities, and juggling family commitments.

While some children on the spectrum and their families cope well with the additional challenges that autism brings, for many others, the impact can be overwhelming.  Children with AS and HFA face many issues (e.g., the persistent challenge of trying to “fit-in” with their peer group, frustration at not being able to express how they feel, daily anxiety because they can’t make sense of what is happening around them, etc.). As a result, these kids often develop stress-reducing behaviors that can make them appear odd and/or defiant. Some moms and dads even avoid taking their “special needs” youngster out to public places rather than face the reactions from those who don’t understand the disorder. This may cause not only the autistic youngster, but the entire family to become housebound.

Other stressors that often impact family life in various adverse ways include the following:

Financial Impact—

Parents of AS and HFA kids may face a significant financial burden. Autism-related expenses for treatment and therapies are very costly and may not be covered by some private health insurers. The copays moms and dads incur for office visits and medications may lead to financial debt. According to research, parents with an autistic youngster undergo an average loss of 14% in their entire family income. Working full-time becomes difficult for both the mother and father. So, they have to endure the increased expenses in spite of having a lowered household income. Full-time employment is crucial for providing health insurance. Thus, losing a full-time job often severely affects the family’s financial status.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

Sibling Impact—

A youngster with AS or HFA also affects his “neurotypical” (i.e., non-autistic) brothers and sisters. The siblings experience many of the same stressors faced by their parents. In addition, moms and dads may not be able to offer them full parental-support, because they are engulfed in meeting the needs of the “special needs” youngster. These families often experience a more intense form of sibling rivalry than is seen in “typical” families. Then there is the challenge of trying to reduce the jealousy and resentment that results when so much attention is focused on one youngster, as well as the frequent limitations on doing common family activities.

Brothers and sisters of an AS or HFA child may suffer from being in a stressful environment, are often unable to socialize because of the difficulties at home, and may be unable to go out as a family. Some siblings become care-takers for their “special needs” sibling in an effort to help their mom and dad.

Parents and professionals alike often lose sight of the need to help siblings understand the disorder. These siblings need an opportunity to voice their questions, concerns, and emotions. An important issue is helping them identify their negative feelings as “normal” and reduce the guilt that often complicates their behavior toward their sibling. Learning that they are not alone in their situations and in their feelings is vital to a healthy attitude and the ability to cope. Thus, support groups for siblings of autistic kids can be very helpful.

Marital Impact—

A study in the Journal of Family Psychology states that moms and dads of kids on the autism spectrum had a 9.7% greater chance of getting divorced than other married couples. Marital stressors often include: financial stress, trying to find appropriate childcare, accepting their youngster’s diagnosis at different times and in different ways (which causes conflict), and not having time to spend together due to numerous commitments and inconsistent schedules.

Kids with “special needs” can drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage – plus the frequent problem of moms and dads disagreeing on what needs to be done for the youngster.

Another source of marital stress is that often one parent is more effective in managing the difficult behaviors of the AS or HFA child. The reduced couple’s “quality time” together is especially problematic, because there is more that needs to be discussed and dealt with (e.g., feelings of grief and disappointment) that may never get processed. The ability to enjoy the positive features of the “special needs” youngster and to grasp what all family members gain from having to address the autism-related challenges can only take place after having grieved the loss of what parents and siblings had expected from that youngster at birth.

The first step to sorting out the difficulties arising in the marriage is understanding the way autism affects it. Family counseling can help moms and dads deal with communication and marital problems. Parents should also consider joining support groups where they can meet other moms and dads with autistic kids. Also, they must take care of themselves too, besides caring for their “special needs” youngster.

Emotional Impact—

Autism brings with it a lot of emotional ups and downs for the all family members, which start prior to the diagnosis and continue indefinitely. A study in the journal “Pediatrics” states that moms of kids on the spectrum often rated their status of mental health as fair or poor. Compared with the general population, their stress level was much higher. Besides having higher stress levels, moms of AS and HFA kids may experience:
  • Anger at themselves, spouse, or doctors
  • Despair because of the disorder’s incurable nature
  • Embarrassment over their youngster’s behavior in public
  • Feeling overwhelmed
  • Feeling socially isolated
  • Frustration at the difference between the parenting experience they are having and the one they had envisioned
  • Guilt from thinking that they may be responsible for their youngster’s disorder
  • Resentment toward their youngster – yet guilt due to the resentment

Moms and dads can become isolated, depressed, and emotionally and physically exhausted from looking after their AS or HFA youngster – and fighting for support. They may feel judged by society, guilty that their youngster is missing out on friendships due to social skills deficits, and frustrated at not knowing how best to help their child.  In some families, at least one parent can’t work due to care-taking responsibilities, which puts a financial burden on the family.  Often, AS and HFA children have disturbed sleep patterns, so they need constant supervision, which is physically exhausting.  As the child grows up, he may become too strong to handle if he throws a temper tantrum.  Some moms and dads believe that they will be the primary care-taker for life, and they are often worried about what will happen to their “special needs” youngster when they die.

The AS or HFA youngster may miss out on valuable social, educational, leisure and life experiences that others his age take for granted. As a result, the child’s confidence and self-esteem deteriorates, which may lead to depression and other mental health problems. Teens on the autism spectrum are especially vulnerable, often being bullied by their classmates or excluded from their peer group. For older teens, the transition into adulthood is just as bleak, because many do not have the social and communication skills needed to live independently or get a job. Many times, these teens simply stay at home or walk the streets through most of their adult lives, and a few tragically break the law and commit crimes often related to their lack of social understanding.

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

On a Positive Note—

Here’s the good news: Children on the autism spectrum have many more strengths than weaknesses. Parenting these children has many positives that outweigh the negatives. So, if you're troubled from hearing about all the "deficits" challenging children with AS and HFA – join the club! But for every downside, there is an upside. These positives are worth celebrating. Here a just a few examples:

They Are Less Materialistic— Of course, this is not universally true, but in general, children with AS and HFA are far less concerned with outward appearance than their “typical” peers. As a result, they worry less about brand names, hairstyles and other expensive, but unimportant, externals than most children and teens do.

They Are Not Tied to Social Expectations— If you've ever bought a car, played a game or joined a club to fit in, you know how hard it is to be true to yourself. But for children with AS and HFA, social expectations can be honestly irrelevant. What really matters to them is true liking, interest and passion -- not keeping up with the current trends and fads.

They are Passionate— Of course, not all AS and HFA children are alike. But many are truly passionate about the things, ideas and special interests in their lives. How many "typical" children can say the same?

They Have Terrific Memories— How often do typical children forget directions, or fail to take note of colors, names, and other details? Children with AS and HFA are often much more tuned in to details. They may have a much better memory than their typical peers for all kind of critical details.

They Live in the Moment— How often do typical children fail to notice what's in front of their eyes because they're distracted by social cues or random chitchat? Children with AS and HFA truly attend to the sensory input that surrounds them. Many have achieved the ideal of mindfulness.

They Play Fewer Head Games— Most AS and HFA children don't play games -- and they assume that you won't either. It's a refreshing and wonderful change from the typical B.S. that tarnishes too many typical relationships!

They Rarely Judge Others— Who's in better shape? Richer? Smarter? For children with AS and HFA, these distinctions hold much less importance than for typical kids. In fact, they often see through such surface appearances to discover the real person.

They Rarely Lie— We all claim to value the truth, but almost all of us tell little white lies …all, that is, except children with AS and HFA. To them, truth is truth -- and a good word from a child on the spectrum is usually the real deal.

As one 12-year-old boy on the spectrum stated, “I'm glad that some people recognize the strengths of Asperger's syndrome. People shouldn't look at us as just weird. They should know our positive traits too.”

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book


Parenting High-Functioning Autistic Children and Teens

Join our sister Facebook Community page, which is a support group and educational resource for parents raising children on the "high-functioning" end of the autism spectrum.

==> Click here to join!

Raising Kids with Autism Spectrum Disorder: Parents' Grief and Guilt

Some parents grieve for the loss of the youngster they   imagined  they had. Moms and dads have their own particular way of dealing with the...