Tuesday, April 12, 2011

Accepting Auism - A Parent's Journey From Suspicion to Advocacy and Acceptance

In this day and age with the rise in disorders that were not quite as common twenty years ago, such as Alzheimer's and Autism - both neurological disorders - it is easy to worry and fret. The fear that either of these will arrive at your doorstep can fill anyone with concerns and anxiety if they let it.

Confronting the fact that your loved one may have a neurological disturbance that challenges their ability to communicate, interact and socialize with you is difficult to face. The possibility that your precious child may receive a diagnosis of autism is news that can drastically alter the course of the life you envisioned for you and your family.

As devastating as this can be it unfortunately is a fact of life for too many parents in this day and age! With the Center for Disease Control (CDC) reporting a prevalence of an autism spectrum disorder (ASD) as 1 in 110 children this is a situation that can potentially present itself to a large percentage of families across the world.

Deciding whether or not to get a diagnosis for any life altering condition can be wrought with confusion, anxiety and doubt and feel like a double-edged sword. On the one hand, knowing exactly what you are dealing with might provide you with some relief by giving you clear direction for the detour your life is about to take. On the other hand, fear of the unknown can easily instill fear and helplessness, thereby halting you in your tracks. Either side of this coin is a very uncomfortable and daunting place to be.

Taking a step towards a diagnosis not only involves a conscious effort to put one foot in front of the other but the courage to see what may lie around the corner. Staying where you are may feel safe for the moment but as frightening as it may be, the sooner you know, the sooner you will be able to move toward your preferred future and have your child reach his or her full potential.

Whether someone has mentioned a concern about your child's rate of development or your gut has been sending you suspicious messages about your child's progress, being in this space can fill you with angst. As unique as we are as individuals, we all move at our own pace and in our own time but sometimes we all need a little push. This impetus may come in the form of new information, the support of others, or the simple matter of listening to and trusting that nagging voice inside our head.

Wherever you currently might be on this anxiety-provoking path, here are some thoughts to contemplate. Parents who are facing a possible diagnosis of autism for their child usually fall into three different categories:

1) The Land of Denial

All parents of special needs children go through this phase. No parent wants to believe that their child will face challenges in any area. Every parent want their children to be as close to perfect as possible, or without significant challenges for sure.

If you are a first time parent you may not have an accurate frame of reference to refer to. If this is not your first child but you notice the difference in your child's development it is easy to explain it away with the notion that ALL children are unique and grow and develop at their own pace which is absolutely true.

If you secretly harbor a suspicion about your child's development, yet fight the thought whenever it enters your mind:

  • Take some time for reflection; time to really listen and objectively observe what is before you.
  • Educate yourself and do your research on typical child development then contemplate the facts.
  • Listen to your gut and what it is telling you. Don't block your ears because you don't want to hear what it might be saying - this is your child we are talking about.

2) The Dismissal Zone

Some parents come to terms with the fact that something may not be right early on and are prepared to address it. They may have found some confirmation for their concerns from various reliable sources yet have difficulty finding a professional that will take them serious enough to explore the issue.

If you are requesting a conclusive diagnosis from your child's pediatrician and are frustrated with the response you are getting, consider the following:

  • Don't accept excuses. If the professional you share your concerns with refuses to listen to you and responds with "he's just a boy..." or " Let's wait another year and see where she is." - listen to your wise self and go to plan B. Time is of the essence and early intervention and treatment is one of the most important things you can set into motion.

  • Get a second opinion. This is no time to be intimidated. Shop around for pediatric professionals and other developmental specialists who diagnosis. Ask to be referred to a Developmental Pediatrician or interview pediatric practices that have Psychiatrists/Psychologists on staff.

  • Advocate, advocate, advocate. Be persistent in your efforts to help your child - don't let your worries and concerns fall on deaf ears. Remember, you are your child's best and only advocate.

3) Floating in Limbo.

Once you have acknowledged the diagnosis of an autism spectrum disorder for your child the experience can be devastating and overwhelming. The disappointment, anger and the feeling of isolation can leave you in shock.

If you have accepted the diagnosis of autism but are confused about what to do next and often feel as if you are adrift at sea:

  • Get the ball rolling. Taking action will eventually give you a clear direction and focus. Early intervention is extremely crucial in making a difference for your child because rewiring the brain while it is most malleable produces the best results.

  • Do your homework. Clear away the debris and alleviate your confusion by turning to reliable sources of information such as experts, associations, and veteran parents of children on the spectrum. The Autism Society of America http://www.autism-society.org or Autism Speaks http://www.autismspeaks.org are good places to start. Autism Speaks offers a 100 Day Kit to assist families in getting the critical information they need in the first 100 days after an Autism diagnosis.

  • Find and join a support group. Don't let any embarrassment or shame you might be feeling get in the way of reaching out to others. There are many other parents who have been in your shoes and experts out there to help you - go find them.

If fear of the unknown resonates with you and you feel that you just can't face this ordeal on your own, search for experts who can support and guide you through this journey. There are a growing number of parent coaches and consultants that are available to help parents address almost any challenge and guide them to take the necessary steps forward. A parent coach can save you valuable time in finding the best route possible to get you to your destination.

Regardless of your situation, should your worries and concerns turn out to be negative, you have lost nothing. If your suspicions are confirmed, you can at least prepare yourself well for your unexpected journey.

Connie Hammer, parent consultant, educator and coach, is your expert guide to the other side of Autism. A licensed social worker, with more than twenty years experience working with families, she supports parents of young children recently diagnosed with an autism spectrum disorder. Founder of Parent Coaching for Autism http://www.parentcoachingforautism.com, she will replace your worries and concerns with relief and results by uncovering abilities to change possibilities. To discover the support she offers with a membership in her Parent Chat Club, a coaching group that will take your parenting to a more confident level, visit http://parentcoachingforautism.com/coaching-services/parent-chat-club-membership/

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