You've received your diagnosis. How are you feeling? What are you feeling? Yes it matters. A study conducted in 2010 found that parents of Autistic children had a higher rate of divorce than non-autistic children. If a “typical” marriage lasts for 10 years, statistically, it is highly likely to be successful, this study found couples who had been married as long as 30 years were getting divorced. The divorce rate for Autistic families is approximately 23.5% compared to non-Autistic families at approximately 13.8%. The affect of Autism on your family is very real and you need to take it very seriously.
You will grieve. It’s a hard thing to accept when someone you love is diagnosed with a lifelong disorder. The six steps of grieving are: Shock, Sadness, Anger, Denial, Loneliness and Acceptance. Be aware that everyone's grief cycle lasts for different amounts of time and different intensity levels. If you, a friend, a co- worker, or a family member receives an ASD diagnosis, be aware and be supportive. When we received our diagnosis a few things happened in our family, both good and bad. My husband and I have grown together even more, but that does not mean it was easy. We have had our disagreements over things like cost of treatment, what is truly necessary, and disciplinary hang ups. I learned a lot about myself as a person and as a mother. We discovered the beauty and marvel at our son's intelligence together. We laugh frequently at our son's humor and still have a deep love for one another. Is it possible to survive? Absolutely. So what are the negatives? I have experienced some of them. My stress levels are through the roof. This is common since mother's typically take over the care of their Autistic child.
Why is the primary parent's stress level so high? That is not so easy to answer. First, financially Autism is a huge impact on the family. On average, Autism costs a family approximately $60,000 per year. Most moderate to low functioning Autistic individuals will live with their parent or caregiver for their entire lives. If a family pays $60,000 per year over an 18 year course of life their cost of care will amount to $1,080,000, and over the lifespan of 50 years (that's cutting it short) they will pay approximately $3,000,000. Folks, no matter how you slice the pie in that situation that is a lot of money. Remember that's on average. My family is on the lower end of the scale, but the cost of care was still a shock when we did our 2013 taxes. On my first blog post, So Now What, I talk about what you can do to help minimize the impact of finances on your life with Autism.
Next would have to be personality type. I am a very type-A personality. My husband is a very go with the flow type person. When Aiden was diagnosed with Autism is was a blip on his radar, for me it was a 7.0 on the Richter scale of my life. I immediately launched into action throughout this first year. Research, doctor appointments, therapy sessions, home proofing, and financial juggling have been part of my everyday life since May 10, 2013. Now, things are starting to plain out and I'm noticing exactly how much stress I was actually under during that first year. There usually always at least one point of contact in the Autistic family, the other parent is aware and educated, but not to the extent of the contact parent. In my family I am the "educated" parent. I am the constant fixture at doctor appointments; I ask a great deal of questions and have total control of my Autistic child's treatments. My husband has filled a very different role and he is absolutely wonderful at it. He will typically focus on the overall nurturing of our two children. It is so easy to get swept up in the world of Autism. I tend to hyper focus on a problem until I feel I have it under control. This is how I understand my world. I'm glad my husband filled this role, it has and will be beneficial to our children.
In a short period after the diagnosis you will find out what type of family yours will become. I have found there are three types of families in the world of Autism: 1- All over educated, 2- Divide and conquer, and 3- The blissfully unaware.
The all over educated family is a situation where both parents are actively involved, equally educated and frequently involved in the research of Autism, therapy, and every other point of the child's life. This type is harder to find than the other two. This is an extremely healthy environment for the child, but be careful if this is your family. Have you ever heard the phrase "To many chiefs and not enough Indians"? This can easily happen. Allow one parent to take the primary role in scheduling appointments; usually the one with the toughest work schedule should do it. Shift worker would be a good example, that way they are sure to get enough sleep. Decisions should be made as a family in every family type scenario, but especially in this set up.
The divide and conquer family type is like my family. This family has one point of contact for everything involving the Autistic child. Therapists, doctors, and treatment care specialists will all usually contact one person. This person will then relay information to the other parent. This parent will be present at 90% of all appointments and if they are not they will always call to talk directly to the treating specialist. This person also conducts research regularly and is the active link between their family and the Autism community. This scenario is also very good, since one person is actively managing every aspect of this scenario. The managing parent should be defaulted to in all matters of treatment, after taking their spouse's opinion into account, since they are the most educated in this area. The pit falls of this scenario are evident. The managing parent is easily overwhelmed and usually very stressed. It is easy for them to feel alone and isolated since their spouse is not as involved as they are. Matters are even worse when the managing parent is trying to work with a parent who is in denial about the diagnosis.
Finally the last type is the blissfully unaware family. This is the hardest for me to understand. This is a family where both parents are either uneducated about Autism or they do not want to address the problem. It is frustrating for the previously described parent types to accept this group. Typically this group blames doctors for not curing their child. These children suffer the most and receive the minimal amount, if any, of treatment. These parents are generally less stressed in ways they can connect with Autism, but do show frustration with their child or children's behavior. Remember Autism is a serious, pervasive, developmental disorder. There is no cure. Intervention, involvement, and therapy are the best options for your Autistic child.
The typical spouse to take the reins as far as treatment and planning is the mother. Approximately 36% of mothers with Autistic children were found to suffer from depression and anger. A 2002 study found Mothers of autistic children were more likely to have a negative impact on their career than the father. Researchers believe the stress of the diagnosis, life style changes, financial worries, and less adult interaction involved in raising an Autistic child maybe part of this statistic. Last month, especially, was a hard month for my family. That was the time I started to decompress after the first year adapting to this new lifestyle. Due to my personality I had been running on adrenaline for so long I began to crash. In December 2013 I was diagnosed with Psoriatic Arthritis. My body had been under so much stress I am sure this disease's onset was accelerated by the impact of stress on my body. Exhaustion had set in by then, but I had trouble sleeping. I was constantly worried, stressed, and overwhelmed for no apparent reason. I became short tempered and snappy with my husband and my children. I finally broke down and talked to a friend over the phone for four hours. She was what I needed and now I'm doing a whole lot better. Talk. Ask for help. Seek out help. I was considering talking to a mental health professional to find ways to help my anger and stress adaptation. This is not a shameful thing; this is a necessary thing if you find yourself going through what I was.
Something that is not included with Autism information is an in depth explanation of possible parent issues. Be aware of yourself and your spouse or significant other. If you discover you are suffering or suspect trouble this is normal. This is part of caring for you. Never be ashamed to admit it and seek help if you or your family needs it. You must care for yourself to be a good caregiver for your loved ones.
Here is a link about stages of grief: http://www.autismspeaks.org/what-autism/autism-your-family
For tips on explaining the diagnosis to others, click here: http://www.autismspeaks.org/family-services/tool-kits/asperger-syndrome-and-high-functioning-autism-tool-kit/how-will-affect-my-
Further information on divorce statistics, financial impact, etc: http://vaxtruth.org/2012/09/autism-and-families-stress-divorce-and-economic-considerations-a-review-of-the-literature/
Good luck. If you need us feel free to contact us through this blog or thorough our Aiden's Hereos Facebook page.
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