“I can’t ever die….” (or, Fear of the Future)

Not long after a child is diagnosed with autism, and the realization that the child will quite likely require lifelong care/support, many parents go through a phase of fear about what will happen once the parent dies.  Because of the incredible amount of effort and involvement required of parents as children grow, it is common for parents to believe that they are the only ones that can provide their child what they need to grow and thrive.  The comment, “I can’t ever die, what would happen to my child?” is all too common among parents of autistic children.  This unknown future adds an extra level of stress to parents who are already at the breaking point of trying to figure out what is happening and what they can do for their child. 

An unexpected childhood – An autism mom asks: What makes a child perfect?

Written by Kristina Chew, this essay was originally published September 10, 2003 in the Princeton Alumni Weekly and is reprinted here with permission.

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After my son, Charlie, was born in May 1997, I purchased a sweater with a big orange P on the front. What will he be when he grows up, friends and relatives wondered aloud. And, with a wink: What college?

Charlie is six now. Cleaning out drawers the other day, I took out the sweater, long outgrown. “What letter?” I asked, pointing to that big P.

“Orrwange,” said Charlie. Behind his glasses, both pupils slid into the corners of his eyes.

Time Well Spent

Originally posted in August 2005 by Wade Rankin at Injecting Sense. Used with permission.

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Tonight I took my 15-year old son, one of my non-autistic kids, to the local fishing pier on the shore of Lake Pontchartrain. There was a nice breeze out on the water, making it the type of comfortable evening we rarely see in South Louisiana during the summer months. A night like this brings people out, and the pier drew strollers as well as fisherfolk. One gentleman and his son caught my eye. The boy was about 10-years old, and was obviously autistic.

Let there be light – A parent’s story of an autism diagnosis

This diagnosis story was originally posted by Brian in the two part entry Let there be light on his blog Autism: Deal With It! on 7-9 April 2006 and is reprinted here with permission.

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Yesterday at work, I was talking with a coworker who stopped me in the hall. The conversation was about recognizing Autism in an infant/toddler and the parent’s perspective. As we talked, I was asked where on the Internet someone could go for good information. Despite the fact that I have spent countless hours on the Internet reading about Autism and the Pervasive Developmental Disorder spectrum, I could not think of a simple sing source of information. Sure, there are tons of sites, but very few address what is crucial for the parent who is embarking on this journey… instead focusing on what causes Autism, how to work with Autistic children, who to become and advocate, etc.

Autism and military service

Special thanks to Wade Rankin at Injecting Sense for the original pointer the Oregonian article.

If your autistic child is in an inclusion setting in high school, attending as a “regular” student, you will eventually encounter military recruiters. As part of No Child Left Behind, public schools are obligated to provide student information to the local recruiters. A recent story in the Oregonian (excerpted below) shows the problems that can occur.

Don’t mourn for us: Thoughts for parents from an autistic man

[This article was published in the Autism Network International newsletter, Our Voice, Volume 1, Number 3, 1993. You can find it online at http://ani.autistics.org/dont_mourn.html.

It is an outline of the presentation Jim Sinclair gave at the 1993 International Conference on Autism in Toronto, and is addressed primarily to parents.]

Don’t Mourn for Us
Parents often report that learning their child is autistic was the most traumatic thing that ever happened to them. Non-autistic people see autism as a great tragedy, and parents experience continuing disappointment and grief at all stages of the child’s and family’s life cycle.

Autism and interaction with law enforcement

As part of planning for growing up and transition to adulthood, here are two key things to consider related to your autistic child and potential future interactions with law enforcement:

• Include education about the purpose and appropriate behaviors towards law enforcement personnel and agencies as part of IEP and other planning documents
• Check with your local first responders (police, fire, emergency medical, etc) about their level of awareness of autism and appropriate training in handling autistic citizens. Help these agencies improve their awareness and training, if needed.

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Charles Fox, on his Special Education Law Blog, has a link to and discussion of the report Avoiding Unfortunate Situations. From the report's introduction:

Law enforcement agencies in the 21st Century are embracing community policing and better education for their increasingly diverse workforce. There is also a growing interest in the global autism community to bring public awareness of autism and the people it affects to law enforcement professionals. As a parent of a young man with autism and reporter/researcher on this topic since 1991, I hope to bring you useful information about autism and the law enforcement community. Sharing critical autism recognition and response information with our law enforcement, first response, criminal justice and educational communities is my mission. The goal? Better community experiences for everyone.

A couple of key discussion points that Charles raises:

One of the truly remarkable statistics referenced in this report is that"[p]ersons with autism and other developmental disabilities are estimated to have up to seven times more contacts with law enforcement agencies during their lifetimes (Office of Special Education and Rehabilitative Services News In Print, Winter, 1993)." In view of the likelihood of contact between law enforcement and persons with disabilities, these guidelines should be considered in developing IEP goals, BIPs and transition plan goals.

The level of candor of this report is refreshing. It openly states in the training section for police that "[a]utism issues remain un-addressed in standard police officer training programs." … Moreover, one area of inquiry should be to your local police, fire and paramedics as to their level of autism training and awareness.

The main part of the report includes sections on What Families Can Do To Reduce Police Interactions and Information for Persons with Autism. The site also includes a Law Enforcement Handout.

The five stages of autism

For many families, a diagnosis of autism in a child brings about a profound sense of loss. Since most people don't actively educate themselves about autism before the diagnosis – let's face it, no one thinks it can happen to them – most of what they know comes from what they may see, hear, or read in the media. Unfortunately, the vast majority of stories about autism in the media are about the 'devastation' of autism, of how kids are 'lost' in a strange and terrible world away from society.

As a result, I think that many people who find themselves facing an unexpected diagnosis slip into the 5 stages of grief. The link provides some details on the 5 stages, including some discussion of why some think they are not valid, but here are the 5 stages themselves:

• Denial
• Anger
• Bargaining
• Depression
• Acceptance

These are the stages, as I understand it, that a person will go through if left on their own, if they don't receive any support or gain any understanding beyond the feeling of loss. One of my goals with Autism for Parents is to present an alternative to these 'default' stages that treat an autism diagnosis as a devastating loss with a series of steps that parents can take to fully understand their situation and go beyond mere acceptance.

Here are the steps I've come up with.

• Diagnosis – the first step on the journey
• Confusion – unavoidable for most parents new to the world of autism
• Understanding – the process parents undertake to understand the situation
• Plan – based on understanding gained in previous step, make a plan for life ahead (which is, in fact, something parents do with all kids)
• Act – live life to the fullest, adjusting the plan as your understanding grows

In many cases, posts will overlap between steps, especially the Confusion/Understanding and Plan/Act pairs. With these steps, I hope to share actual stories from parents who have gone through these steps as well as simple (and some not so simple) checklists of things you can do.

Site update: Podcasts and other new listings

In addition to the written word of books, blogs, and other websites there are many autism related audio/visual resources. I’ve added a new page, Podcasts and other Multimedia Resources, that will list these resources. Thanks to Michael Boll from Autism Podcast for letting me know about autism podcasting.

I’ve also updated the Blogs by Autistics page to include The Rettdevil’s Rants, a recently discovered (by me) blog by 23 year old Kassiane.

Autism resources for parents

Part of what I'm hoping to accomplish with this site is to provide a good starting point for parents trying to learn more about autism, with information and links to a wide variety of resources – both on and offline. I've established a series of pages that will list and discuss some of these resources.

Blogs:

Blog, I believe, represent probably the single largest resource of current and ongoing information for parents of autistic children. Of course, finding a blog (or blogs) that help you personally can be a challenge. The sheer volume of blogs and diversity of perspectives and opinions can get to be overwhelming. I know that there are many, many excellent blogs on the subject of autism that I've not yet discovered that others read everyday, but I just don't have the time to seek them all out myself.

To help parents new to autism get a good start on finding autism blogs that may help them, I've set up two pages for links to blogs: Blogs by Autistics, and Blogs by Parents. If you know of a blog that you think should be listed here – or if you write one you'd like others to know about – please let me know.

Books: Even with everything available on-line, books remain an excellent source of information for parents. My intent for listing books is to provide a list of books that other parents or autistics especially like, and when possible a review of that book to help others understand what is good/bad about the book. I've set up a page, Autism Books, to provide that list. From this list, each book will link (eventually) to a review(s) of that book. I've started it off with a review of Some Kind of Genius I originally wrote last September. Again, please let me know of any books you think should be listed and if you have a review you would like posted here.

Other: I've also set up a page to list the various organizations related to Autism. I've not done any work on this page yet, mainly because I'm not really very familiar with the organizations or their missions. These organizations range from support of finding a cure to advocacy of autistic rights. Any suggestions on how this might best be formatted are greatly appreciated, as are recommendations for which organizations I should include.