A Message For Parents: You Have the Power

When a child is diagnosed with autism, parents tell me they experience a range of emotions, from shock to despair to hopelessness, often with very little encouragement or light at the end of the tunnel. There is no “The bad news is this, but the good news is that”. It’s “the bad news is your child has autism, and the worse news is there is no cure and he probably will not have a very good outcome”. Some parents are still told they should just focus on their ‘normal’ children because the one with autism will likely not amount to much. One family relayed a heartbreaking story of a professional that not only informed them their child had autism and should be institutionalized, but also that they should put him in ‘time out’ and spray him with a water gun every time he flapped his hands as a form of self-stimulation, as if he were a house-pet that were peeing on the couch. This is a child that likely did not make an association between behavior and consequences and probably was living within a very confusing sensory-perceptual experience. And this was not 20 years ago, but more like 5.

I am here to tell you that while there still is no ‘cure’ for autism, there IS a tremendous amount that you as a parent can do for your child to help him lead a very meaningful, joyful and enriching life. Your child can make significant progress and have a wonderful life. You also can have a “normal” life, as a parent of a child with autism. You can choose to focus on those things that will enhance your child’s development AND create a high quality of life for you and your entire family. In addition, you can choose not to feel guilty that you may desire to do something different than what is commonly expected in the autism treatment world. Only you can know what feels right for your child and family’s situation.

My hope is that you as a parent can experience freedom to choose what works for you and your family. Historically there has been a lot of fear in the autism field. This fear has come through in the design of treatments that initially focused on the appearance of ‘normalcy’ without giving thought to the internal experience of the person being treated. In addition, people with autism were also not treated with much dignity or respect. Therapies that are based on the theory of the old model often seem to be more concerned with changing behavior to make ‘normal’ people feel more comfortable, as opposed to leading to improvements in Quality of Life (i.e. Employment, Relationships, Independence).

Parents are given a large injection of fear throughout the assessment and treatment planning process (“If you don’t get him to do X by the time he is 5, it will never happen”). In many cases, families are provided with a diagnosis and immediately corralled into a range of therapies in an attempt to ‘cure’ the child by the time he is in Kindergarten. Be very mindful of this tendency to base decision-making on fear. If you are feeling fearful, you are more likely to operate out of a fight-or-flight mode, which is reactive instead of proactive. If you are operating out of fear, it is highly likely the approach to your child’s autism will take the form of ‘treatment’, ‘cure’, or ‘fixing’ him (even if those words are not used). Your child may very well perceive judgment and shame, and may come to learn to ‘go through the motions’ to appear acceptable to others. Don’t make decisions “because everyone else is doing it”, but instead carefully consider how an approach will help your child and what impact it will have on the entire family’s quality of life.

Some families have enormous success with the traditional treatments and others keep searching because their child needs something different. In my practice, I have attracted those families who have more complex children that have not responded as well as their parents had hoped. For those brave souls who keep searching and who not only do not give up on their child, but who also may be among the first to stray away from the traditional path – I applaud you. It takes courage to go to a parent support group or talk to parents in a waiting room and have them ask you why you are not doing X, Y or Z therapy like every other parent who has a child with autism? Surely you must know that the only way you can recover your child to a ‘normal’ state is if he spends all his waking hours with people other than his immediate family so they can perform “intervention” on him. Has no one asked the question of what would happen to a “normal” child if he spent 40 hours a week in highly directive, one-sided therapeutic settings, constantly bombarded with questions and ‘testing’ of his knowledge? Would he maintain his natural motivation to be with people, or would he want respite from their demands?

I am not saying that some children don’t benefit from structure or repetition, but I am saying that as a parent, know that what your child needs most for healthy development are things that only YOU can provide. Children need a strong foundation of safety and security to anchor them in the world. This is even more true for children (and adults) with ASD because individual neurological vulnerabilities and differences make them more prone to becoming stressed. I don’t necessarily mean ‘emotionally’ stressed, though that may be the case, I am also referring to the fact that people on the autism spectrum are often operating from a state of panic and overwhelm. This occurs on every level, from the level of sensory processing to emotional regulation to social interaction to cognitive functioning. It’s like a house of cards where some of the bottom cards are missing – the slightest breeze, and the whole house comes down.

As a parent you can give your child a solid, strong foundation so he develops the following capacities that are important for a high quality of life:

• Desire to connect and share with others
• Ability to recover from stressful situations and setbacks
• Competence in Relationships
• Motivation to explore new things and try new challenges
• High level of self-awareness
• Self-Regulation for as much independence as possible
• High sense of self-worth and self-esteem
• Self-expression through creative pursuits and hobbies
• Cultivation of special talents
• Feeling loved and accepted for who she is

If you as the parent have the most power to support your child, does that mean you have to go it alone? Of course not. You can seek emotional support through local and online parent groups as well as work with a variety of professionals who can guide you on your path. Knowing you have the power to help your child does not mean that you have to sacrifice your whole existence to autism either. You can prioritize those things that will make the most impact on helping your child live in the ‘real world’ (as opposed to an artificial compensatory environment where he looks good as long as there are no unexpected surprises). You can hire babysitters to give you a break and you can use therapies strategically to get the most benefit while conserving your (and your child’s) energy.

You will likely move through different phases in your child’s treatment over his lifetime, and there is no one ‘right’ way to go about it. If you understand from the beginning that there is not a cookie-cutter approach to treating every child and that you can learn to assess at any point in time exactly what he needs right now, you will relieve yourself of a lot of guilt and anxiety about your decisions. Keep these words in mind: “This is for now, NOT forever.”

Here are a few things you can do daily to support one of the most basic foundations children need, safety and security:

• Cuddle with your child. Did you know that facial gazing, synchronized breathing and touch boost brain chemicals important for bonding and social interaction? If your child is too old to cuddle, there are Tactile Integration programs out there that look like a massage, which provide much-needed organized input for your teen or adult family member with autism.

• Make a point to smile and make eye contact with your child any time she meets your gaze. This is for the same reason as mentioned above.

• Give your child a ‘job’ to do so he experiences himself as an important part of the family. Put him in charge of feeding the dog or emptying the dishwasher. If he is too young or needs help to complete his chore, do it with him (not for him). Some children develop a brand new sense of competence and motivation when parents give them roles like this.

• Spend time daily to be with your child side by side without placing any demands on him. This means nonverbal demands as well – don’t constantly orient toward your child every time he makes a move. Don’t lean your face in to his face. If you have a tendency to talk too much, be quiet. Give yourself a short time frame to get started with and gradually expand the time. (Note that watching TV together does not count).

• Adjust your pace so that you and your child are in “rhythm”. If you are frantically prompting and repeating questions three times before your child can respond, then your communication is not balanced. Slow your pace and give your child time to respond. Be mindful of a 1:1 ratio of communicative attempts if possible.

These are general suggestions to get started with bonding and creating an atmosphere conducive to developing those capacities that are required for a higher quality of life.