Why my marriage is a package deal: Caring for a sibling with autism

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/ Source: TODAY
By Lauren Prince

This past autumn was a big one for my family: I married the man that I fell in love with nearly a decade ago.

It was a joyous day — a fairytale, as it is for most. Our marriage is typical in many ways. But one responsibility that is unique in our marriage is the recognition that, some day, my brother Madison will be our responsibility.

The author with her brother Madison, at her wedding.Moshe Zusman Photography Studio

Madison is autistic. For me, this idea that he would become my responsibility was a reality when I was younger and understood what his limits for an independent life would be. At a young age, I knew that Madison would always be in my life in a way radically different than most siblings. In fact, I recognized before I met my husband, Tyler, that whomever I married needed to love Madison as much as I do — or else my marriage would be doomed.

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Tyler says that he looked at marrying me as a package deal: Marrying me meant taking responsibility for Madison’s happiness and well-being. No pressure. Before we got engaged, we had this conversation many times. Regardless, I was still nervous that the pressure of taking my brother on as additional responsibility was too much for a young marriage. But on our wedding day, I was assured that he knew what this bargain was about. In fact, my now sister-in-law included the fact that his family saw our marriage as this package deal, and that they loved and supported Madison as much as my older brother, Chandler, and I do.

Lauren with her family.Moshe Zusman Photography Studio

Here is the reality for most adults with autism: Due to federal standards, most on the spectrum attend school until the age of 21. After that point, there are few options for employment. The lucky few will be placed into supported housing, where they are provided care and attention but are not guaranteed dignified employment. But those options are too few. More often, adults with autism will remain in their parents' care until their parents can no longer physically handle the responsibility.

After that point...is precisely the problem. Nobody yet knows what will happen after that point. Our best information is that there are over a half-million autistic adults in this country, with 50,000 added to that number each year, and three-fourths of them are living with aging parents. This is a crisis waiting to explode.

Madison escorting their mother down the aisle at Lauren's wedding.Moshe Zusman Photography Studio

Other options place the responsibility of care with other family members, most likely siblings. In our case, Madison’s care will be both my responsibility and Tyler’s.

We both have high hopes that Madison may be able to live a more independent life than what is currently available to him. In fact, my parents are tirelessly working to establish a sustainable farm that provides housing and employment to adults on the spectrum. Tyler and I have dedicated our spare time and energies to support this cause and hope that this can provide more people than just Madison with a happy future.

But there is work to be done.

Lauren Prince is a native of Maryland and currently lives in NYC with her husband. She works in newsgathering at NBC News.