Caring for a family member with autism is a demanding role that presents many challenges. For parents, it begins with the diagnosis that their child has the condition. This would be shocking news for most, given that autism is a spectrum disorder. Some of the characteristics that are, in fact, associated with autism may go on undetected.
Sometimes, parents may also think that some behavioral issues that their child is manifesting have to do with personality, or that they are just a part of the phase of growing up. The symptoms of autism tend to vary and, oftentimes, are unique to the individual. Therefore, being informed by a specialist that their child, in fact, has autism can be very devastating for parents. It’s a common reaction for parents to feel at a loss after receiving the news. Feelings of anger, helplessness and frustrations might surface.
Some Ways that Parents Can Cope with the Initial Diagnosis
1. Parents should turn to each other for support and comfort. One of the challenges of finding out that a child has autism is that it puts a strain in the marriage. The pressure to keep things in balance while adjusting to their new way of life can be overwhelming for a couple.
2. It is advisable for parents who are dealing with a child who has autism to seek professional assistance. During the adjustment period, parents are prone to high levels of stress and depression.
3. Seeking the support of friends, family and relatives is important. The diagnosis of autism in a child changes the dynamics of the family. The other siblings will have to play a crucial role in supporting the person who has special needs. Friends and relatives will also, sometimes, be asked to be caretakers. It’s important early on to develop a support system, and be upfront about what the family’s needs are.
4. Parents should educate themselves regarding Autism Spectrum Disorder. One of the issues that arise in parents is the fear that they don’t know how to care for their child who has special needs. This type of self-doubt about one’s parenting skills could be very crippling.
There are many sources of information regarding autism nowadays. The internet offers a wealth of information family members can take advantage of. There are also online support groups that foster a community for families dealing with autism. Websites such as Autism Speaks, (http://www.autismspeaks.org/) provide extensive information about all aspects of this condition.
How Autism Affects the other Siblings in the Family
One of the strongest characteristic of autism is social withdrawal. Individuals with autism tend to isolate themselves. The act of partaking in social activities might be severely challenging.
For the other siblings who want to bond with their brother or sister, this can be a devastating reality. Not being able to express their affection, interests and observe some of the important moments in their lives with their sibling who has autism can be a heartbreaking experience.
The relationship of siblings is a very important connection in life, and with it, go certain expectations. Siblings require understanding and trust from each other. They consider themselves as peers and at times, become each other’s confidante. This is a part of the bonding experience with siblings, so having an autistic brother or sister who can’t quite fulfill this role can be a bit frustrating.
Feelings of guilt and confusion might also arise stemming from the fact that they get to enjoy and do things that another sibling who has special needs can’t do. Not to mention, seeing their autistic sibling grow up in a constant state of isolation.
How Siblings Can Better Cope with a Family Member that has Autism
It’s important for the siblings of a special needs child to be able to communicate all of their feelings about their situation. Parents can play a crucial role in their children’s life by providing an environment at home that is free of judgment.
Friends can also help create a support system for individuals who have a sibling with autism. Initially, it would not always be the easiest thing for the siblings of a special needs child to bring new people into their home life. It might be difficult for them to invite friends over, or even share some of the things they’re going through in fear of being misunderstood. Worse yet, they might be hesitant to share their difficulties with friends because they don’t want to put their family or autistic sibling in a bad light. All of these are valid concerns, but it also goes that good people make good friends. It’s best for people to talk to their friends and educate them regarding the particulars of their sibling’s condition.
If visitors are to come over in the house, they should discuss with their friends how things work. For instance, if there are any particular rules, such as not making too much noise in the house (some autistic individuals are noise sensitive), this should be communicated with friends prior to the visit. An individual with autism also displays repetitive behavioral patterns, and have some difficulties with verbal communication. All of these things should be explained to friends. This way, they would know how act accordingly.
The Cost and Challenges of Living with Autism
Parents, at times, still suffer from the judgment of other parents regarding the way they are handling their child’s behavioral issues. Sometimes, they find themselves in a situation of having to defend their child’s rights especially in public places where, at times, the discomfort and attitude of other people towards individuals who have autism can come across as disapproving.
There’s also the issue of financial constraints pressed upon the families who are dealing with autism. Autistic individuals, especially those who are on the more severe side of the spectrum of the disorder, will require some form of service. This may include periodical visits to specialists, pediatricians, behavioral therapy and getting specialized education. All of these can be very costly. There are organizations out there such as: Autism Speaks (http://www.autismspeaks.org/) that advocate for the welfare of individuals with autism.
In a recent post I made about how autism affects your health, I cover some other interesting topics so be sure to check that one out too.
Some of the ways that organizations for autism try to help families are by:
- Holding fundraisers to benefit the autism community
- They also accept donations to help support families with autism
There are also organizations that offer free online courses on autism for the purpose of enhancing people’s understanding of this disorder. This is especially useful to family and friends who are also caretakers for individuals with autism.
Having a family member with autism can be daunting, but the reality is that every family goes through difficulties. It’s how they cope as a unit during the tough times that defines the value of their experience. For families dealing with autism, the important thing to keep in mind is to focus on the love and the joy that each family member brings, and to value the time spent together in spite of the difficulties that life presents.
I wrote another article on treatment for autism, which is worth checking out while you are here.