The Family Dynamic: Post Diagnosis

I realized that my boy had Autism but was astonished with the severity of the diagnosis. “Chris is self injurious. If he does not speak by age five, he will probably never talk. He is mentally retarded, has speech and language disorders, PICA and intestinal issues. If I were you I would consider institutionalization.” The neurologist was harsh to say the least.

Parents are dearly affected after receiving a diagnosis of Autism. Emotions range from guilt to extreme depression. Looking back a more accurate diagnosis might have been: “Mr. Davis you have been blessed with an incredibly unique child. He will be challenging, compelling even spiritual. Your son will expand your vision and fill your life with hope. There will be difficulties and painful days but you will grow together. You will encounter behavioral problems, bio medical issues, language delays and sensory overload but you will meet them head on. Your child will strengthen you. Hold tightly to family, friends and sense of self. In the end your boy will allow you to discover purity and know unconditional love.”

Parents, life is about to become interesting. Life is about to become stressful as well. Autism is indeed a struggle but families can enjoy their time together. Many parents deny the diagnosis; they feel loss, anger and finally arrive at acceptance. Couples must learn to work as one:

• Learn about Autism as a family
• Romance is still important
• Friendships are important as well
• Surround yourselves with support
• Educate the siblings
• Look over treatment options
• Examine medications and supplements
• Review dietary intervention
• Become experts
• Be patient and love your child

Mothers of children with Autism are extremely resilient. They seem to balance stress well but also suffer from bouts of depression. They worry if they are doing enough. As recovery and therapy becomes their lives, moms begin to feel alone and isolated. There is more anxiety amongst mothers of children with Autism, than with any other disabilities. Mothers deal with an incredible amount of stress on a daily basis:

• They are isolated, without friends
• Marital problems
• Daily care
• Finances
• Behavioral outbursts
• Fighting school districts
• Eating disorders
• The future
• Loss of expectations

Mothers are left out socially because the child with Autism is not usually invited to birthday parties or picnics. Chris and I visited our family for Easter. He was young and quite a handful. We were all playing in the backyard, when Chris began to gulp down pails of wet mud. Everyone scurried inside and I started to scoop sludge out of Chris’ mouth. I cleaned him up and took him home. We were not asked to attend family gatherings again.

Moms forgo careers and dreams. There is no money for luxuries. French manicures and hair appointments become distant memories. Mothers of children with Autism find it difficult to find time to pamper themselves. Typical moms go to amusement parks with their children, take time to workout and have private time with their husbands. Our mothers go to IEPs, seek out DAN doctors and fall asleep with ABA data in their hands.

Learn the warning signs of your child’s behavior. Create plenty of structure and routine. Prepare your child for changes and surprises. Do not worry about stereotypical behavior. Give your child a voice.

Some good advice:

• Do not second guess yourself, not every child will be cured
• Do not stress over your dreams
• Make time for your spouse and siblings
• You do not have to experiment with every therapy
• Don’t assume your genetics are to blame

Please seek out support groups. They can provide valuable resources. Secure respite care. You cannot do it all. Take some time for yourself. Consult with professionals, you are not alone. Advocate for your child. Winning an IEP is terribly empowering. Record your experiences, you never know, your story might appear on the Autism Today site. Parents are experts too.

Dads you are going to have to become a different type of father. Men feel powerless and women feel isolated. Fathers want to take action, “fix” the disorder. This philosophy can cause terrific stress. They feel the financial burden deeply and obsess over the future. Become an active dad and realize the beauty of your relationship. Attend seminars, sit in on therapies and attend the IEP. I know one Mom who whispered to her husband that she would wear her Victoria’s Secret outfit if he showed up to the school meeting. Not only did he participate but I believe he changed his name to Lovaas and produced a thesis on sensory integration!! Seriously here are some points to remember:

• You are no longer the center of attention. Collect many take out menus!
• Talk to dads of disabled children
• Work as a family
• Recognize your wife’s approach as valid
• Celebrate “baby steps”
• Your involvement can improve your child’s communication by over 50%

Moms, please remember that your husband is an almost traumatic state. Set up a small table off to the side with all the information that you want your husband to take a look at. Keep him informed. Men tackle problems one step at a time; women have the ability to multi task.

Couples must reach a joint acceptance of their child’s Autism. Do not blame each other. Communicate about therapy and recognize each other’s needs. Spend time alone. Autism is kind of like a second mortgage, a 24 hour a day job. Take time to exercise together, and insist on regular physical checkups. Reach out to the special needs community. Co-operative parenting is the key. We have all sought out specialists for our children; do the same for your marriage and family. Utilize psychologists, social workers and counselors. They can provide coping skills.

The family is experiencing constant strain. The finances are drained, siblings are lost in the shuffle and you internalize your child’s pain. Constantly refresh your relationship. Empower and energize. Learn who your child is, hold him close and love him deeply. You and your family will be changed forever.

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Related posts:

1. Autism’s Hidden Casualties: Typical Siblings
2. The Guilt Factor