Challenges of Raising An Autistic Child
Living with Autism
The challenges of raising an autistic child are many and varied just as the challenges of raising children in general. These can vary widely depending on the severity of the autism and other handicaps or medical conditions the child may have. What I will do in this article is highlight some of the challenges that are shared by most raising an autistic child.
Before I go on let me give you a little background. I have raised my great-nephew Aaron from age 6 and he is now 23, as a single parent the whole time. In addition to the Autism he has severe developmental delays as well being affected by fetal alcohol syndrome. The only preparation I had was the fact that I have worked with kids in varying situations and facilities from the time I was a child myself. I knew little about autism; what I did know was that Aaron needed someone to work with him and teach him..
Finding Adequate Support Services
One the first challenges I faced was finding adequate support and other resources, especially affordable ones. While much more research has been done and all kind of websites, books, therapies, visual aides have been produced since I got Aaron in 1998, much of it is out of reach for the typical family either because of the cost involved or the time demands of implementing the therapies. Getting help through the school and other agencies requires much patience, persistence and tenacity. In addition to this as the child gets older some types of help disappears completely. For example once Aaron turned 13, I was no longer eligible for child care assistance. At the time child care consumed over 30% of my budget. Of course this assumes that you can even find someone capable of caring for your child at all!.
Another challenge that quickly surfaces is the sheer physical, mental and emotional intensity often involved in raising an autistic child. The child often requires near constant supervision, and depending on the sensory and medical issues the child may experience, constant adjustments in approach and environment is also required. An approach that worked yesterday may not work today. Situations that were not a problem this morning may cause a complete meltdown this afternoon. I found that things that were supposed to motivate good behavior sometimes resulted in the opposite occurring. Even skills learned in one settling totally disappeared when needed in a different setting, because for the autistic child any change in the learning environment can constitute a whole new situation.
Family and Friends
One challenge that may not seem like much on the surface, but trust me can add stress to an already stressful situation, is dealing with well meaning family, friends and others who unintentionally undermine your efforts by accepting behaviors that they would never accept from a normal child or allowing behavior you have asked them not to allow. If I had a dollar for everyone who told me I was too hard on Aaron I could take a nice vacation! Most did not understand that many autistic children can't make the hundreds of small decisions and differentiations we automatically make each day, so they have to be given one standard they can use in every situation. By nature this means that in some situations it will be a stricter standard than warranted. I finally dealt with such comments by asking the person what week did they want me to drop him off to their home. This always took care of their objections!
Keeping the family life balanced and making sure the needs of all family members are met can become quite a chore as well, especially for those with either other children or other autistic children. It's unfortunately not uncommon for marriages to disintegrate due to the stresses within the family. It is very easy to allow the family to be centered around the needs of the autistic child to the exclusion of the needs of the rest of the family. It is important for the family to develop a support network to allow each family member a break and time to themselves. I quickly learned that some "me" time was not selfish but vital to me staying positive and upbeat.
Needless to say books have been written concerning this topic and I suspect that each parent of an autistic child could write their own. This article is just the tip of the iceberg, I hope it will at least shed some light on some of the dynamics involved in raising an autistic child and make you more sensitive to the potential needs of your friends or family members raising autistic children. Over the past 12 years I have learned that the key to managing all of these and other challenges is first managing myself and my responses. I found that as I maintained my composure I could maintain control of the situation. On the other hand when I failed to maintain my composure life was not pretty! As the main component of the child's environment and often the central person in the child's life, it is vital for the child's sense of safety and stability that parent remains consistent, loving, and reliable.