Autism is a mystery and new families are often lost in confusion when it comes to raising a child with this disorder. Getting into the world created by children with autism is the greatest challenge many parents and families face. It is very difficult to understand autism, what to do about it, and how to handle it. This article outlines one family’s journey with the disorder.
A lot of families rely on doctors, therapists and other professionals to prescribe the best medicines and therapy interventions for their autistic child. But, the fact remains that autism is still a mystery and perhaps will continue to be a mystery for some time to come. There is no cure and without the proper knowledge in the home, autism can be a disaster. The knowledge that helps families cope the best comes from self-education and takes time and patience to acquire.
Getting into your child’s world takes time and a lot of patience. Patience, in fact, has been the key in my own family’s journey. You cannot create a world for your child with autism; they create a world for themselves, a world you must come to know and find out how you can give of yourselves in their world. You learn a great deal by sitting back and observing your child’s first few years and discovering what their world is about. It does not resemble in the least how you were raised as a child'”none of that works in the world of autism. That which you were taught does not apply to the autistic child and, in fact, using the tools you learned or may use with another child will backfire with an autistic child.
Discipline of an autistic child is nothing like what many of us were taught. Treating an autistic child the way you treat a normal child or expecting a normal child’s understanding from them won’t work. The normal interactions that you have with a non-autistic child will harm and often traumatize an autistic child. They do not understand normal discipline, regular boundaries or many of the ways of interacting that we are used to with normal children. The child is yours, but to work with them and not confuse or harm them, you must learn how their world operates and respect what works (or doesn’t work) for them . The chance of an autistic child understanding your approach is slim-to-none. Misunderstandings about your approach will later bring outbursts of confusion and misery for you and your family. On the other hand, when you do understand their limitations, you can establish peace in your family and peace of mind for you and your partner. Then it is possible to introduce new learning to your child and bring them into your world step-by-step, over time, often several years.
Doctors cannot do it all, just as therapists cannot. The medical community can only provide help during the few hours a week they spend with your child. The best help is comes from the family at home. Parents and siblings of an autistic child must remember that the child is creating their own world rather than learning to fit into yours. Since you are in their world each day, the autistic child will create their own world for themselves and will include you in it; only parents and siblings in the home, that have been brought into the autistic child’s world have the ability to eventually assert control within that world and, then, only through patience and compassion over the long term.
Until you learn the unique parenting strategies that help with autism, it can be very, very frustrating. The problem with frustration is that its energy transfers right onto the autistic child and will create nothing but chaos and pain. Take a timeout rather than allow anger to rise around an autistic child and try to maintain an open mind and peaceful thoughts so you can be accepting of what your child is doing. It may feel weird at first, as it did for me, but it is important to let your child do what they are doing without judging it as strange or bad. The first two or three years you may find yourself asking, “what in the world is this child doing?” You must take care, though, to not act out in anger. Here is a list of normal disciplining behaviors that backfire when used with an autistic child:
Taking away privileges
These attempts at controlling an autistic child not only do not work, they make things much worse because the autistic child does not have the capacity to understand them, therefore cannot respond appropriately to them. A general rule with parenting an autistic child is that anger begets anger.
Your best option is to observe your child’s weak areas, think ahead and help him avoid the things s/he should not be doing and to be consistent. Don’t let him do something some of the time and not other times. For example, if your child is flipping the lights on and off and you want to teach him that it is not acceptable, your best option is to consistently respond to the behavior (or any other), by saying, “No, that is not acceptable, we don’t do that,” even though your child may not understand the statement. However, the consistent message and the correct discipline eventually will help him understand which behaviors are acceptable and which are not. After a period of time giving the same message your child, if he continues to repeat the behavior, remove the light switch or somehow make it inaccessible to the child. There is a good bit of OCD-type behavior in autism and a repetitive behavior may be a manifestation of a compulsion they cannot control. You may see some upset when you make something unavailable to the child, but that is only because the child still feels the compulsion to “flip the switch” or whatever the behavior was, but they will eventually settle into the boundary you have set for them. Even if the child does not fully comprehend what you have taught them, they absorb the facts of the matter nevertheless. This is an example of environmentally engineered discipline without harming the child or without getting angry or frustrated as a parent.
Redesigning your home will take advantage of changing the environment to better help your child. As you learn their actions and movements, you can foresee problems that can be avoided by simply rearranging or designing things in a way that is helpful to the entire family. Just as you baby-proof a house for a toddler for their own safety, you can do the same for a child with autism. Your home and the decisions you make within it may be very different from those around you, but it is an extraordinarily powerful step in adapting to autism, which is a whole family affair. With the right mindset, you can go far in designing a cost-effective and safe environment that will make everyone in your family happy, such as:
Remove buttons from televisions
Build or install gates to channel the child’s access to certain parts of your home
Add outside locks to bedroom doors
The list is endless for things you can do to your home to show your child that you are the boss of your house, but just remember that you have to be the boss in a much different way for an autistic child than you are for a normal child who understand normal discipline.
As you observe your child for their first few years, take note of their weak spots, the things they should not do and the things they do well. As you do so, you are slowly entering their world. When you start to redesign your home while your child is asleep or in school, and then you are beginning to create your own world together with them. You end up with a world in which you can enjoy life with your autistic child and it is up to you to let them know what they can and cannot do. If you think of it as teaching them the rules of this new world you have created, it helps you maintain order and discipline. The only way an autistic child can learn the rules, and they will learn, is if you repeat the rules consistently without anger. Some of the rules we have repeated in our home are:
The television is not to be turned on and off all day
Once in bed at night, you stay in bed
Objects cannot be placed in the toilet
Cabinets are not to be opened and shut
Not to wake up family members for play
Gates mean you are not allowed in that area
Not to remove items from drawers and cabinets
Just as with a baby or toddler, your autistic child’s safety must become your major concern. Many of the normal child safety devices are ineffective with autistic children. They figure them out. We have found that child locks on cabinets and refrigerators simply do not work. They worked for a while, but as your child gets taller and older they will quickly learn how to either tear down the gate, open it, or just simply climb over it. Then it is a good idea to build your own gates or find someone that can create gates that take into account your child’s powers to open or get through them. Sometimes other major steps might have to be taken, like bolting down your television and other furniture. As drastic as that might seem at first glance, take it from me, it can only take a moment for furniture and your television or other precious items to go from being in one piece to laying on the floor broken because your child was curious or felt compelled to try to move something. As your child grows bigger and stronger, putting vulnerable items away and bolting down valuable objects is a key part of controlling their energy and keeping family peace.
I know many families don’t want to make changes like this, but to be realistic, you must make changes to accommodate an autistic child or, trust me, your home life will be total chaos. These types of changes will go a long way to create a healthy and safe environment that everyone in your family can enjoy. Having nice furniture or a big entertainment center might not be options anymore, but changes like these will certainly help create a peaceful and loving home when you have autism in the family. The sooner you accept the fact that if your valuables are neither put away nor nailed down, they probably won’t survive, the sooner you’ll achieve a peaceful lifestyle!
In time you may find that the years of consistent discipline in your home will transfer to your autistic child’s behavior in public or in other peoples’ homes. Often this is the case because the rules become engrained in your child and he or she will apply them to homes that are not like your own. Even when you see that this is the case, it isn’t necessarily a good idea to take away the safety features you have incorporated at home, because it may cause a relapse or upset your child’s equilibrium and cause acting out or regression to behaviors not seen since early on. It is always best to keep your home design stable for many years and only make changes gradually and one at a time, with a period of observation so you can tell if regression will be a problem. Living with an autistic child will increase your creativity and your ability to think ahead and anticipate how you know your child may react. Consistency is vital, and it is unwise to ever allow something that you never allowed in the past. With a normal child you can do this because they understand the concept of an “exception to the rule”, but autistic children simply become confused and often distraught with changes to what they’ve come to know as “normal”.
What I have written here may seem harsh and out of the ordinary to some. But to parent an autistic child means you must reach beyond the ordinary for what will work with your child’s unique and challenging needs. As you mindfully create your environment to accommodate your child’s unique capacities and limitations, you will find that your home will be more peaceful and you will experience fewer outbursts. Other children in the home will learn to be understanding and accepting of the measures you take and you will most likely see their understanding reflected in their behavior toward their autistic sibling.
The primary goal of creating a peaceful atmosphere will help your autistic child spend more time learning things that will benefit him in time. Speech, correct play, eating and other lessons will help your child develop an open mind and experience less resistance to your control. S/he will become curious about what mommy and daddy are doing (always a good thing) and as they find nothing to get into or be destructive with in the home, they will naturally become open to your world and your influence. The home is where these important distinctions need to begin and parents are the best teachers in the world for an autistic child. Doctors and therapists cannot redesign your home and they will never come to know your child like you do. Doctors and therapists help tremendously, but only you can make your child’s life the best life possible.
Always bear in mind that an autistic child cannot be forced into living the life of a “normal” child. The lifestyles of a normal child and the lifestyle of an autistic child are completely different. Just as a normal child would be traumatized if forced to fit into an autistic child’s lifestyle, the same holds true for the autistic child. The most important lessons we’ve learned about raising a child with autism is to slow down. When you think you’ve slowed down, go even slower. Be willing to repeat lessons, statements and routines for as long as it takes for your child to adjust to them. Make changes with caution and if you do need to make a change, do it gradually. With these ideas and those you gather from your health care providers and community, and your patience and understanding, you can create a peaceful home for your family, filled with love and compassion and, above all, happiness.