Matthew, age 6

Today, I received an email from a friend and fellow homeschooling parent, in which she asked me if I might have any resource recommendations for her friend’s nephew, who has just been diagnosed with autism at age 15. Wow.

My son’s diagnosis was “official” when he was 7 years old, but I had already had my suspicions from the time he was an infant, and I had been delving into all the seemingly applicable literature I could find and parenting Matthew “as if,” even though the public school system (including the district’s early intervention program) was remiss to carry out testing and potentially (more like obviously!) be bound by law to offer him accommodations.

I can’t even begin to imagine what it would feel like for a family to be effectively drowning for 15 years of their child’s life, and then suddenly one day find that they must learn to swim in shark-infested waters. So, after my heart was finished bursting into thirteen million pieces and I sopped up the blood, I wrote this message (below) in response to my friend’s inquiry. I have decided to post it on my blog in the hope that it might be helpful in some way to others facing similar challenges:

Though I don’t have any kind of straightforward recommendation, I can give you some general impressions from our experience:

The one thing I am positive about, is that the public school system was totally ineffectual for addressing/accommodating for Matthew’s needs, and no one I ever talked to who had kids on the spectrum who were also in public school reported being satisfied with the “help” they were receiving. I think this is truer for kids who are higher functioning and who can manage to “fall through the cracks” (because they don’t have the kinds of profound behavior issues that get noticed, etc.). Also, as far as I’m aware, there is no such thing as an “autism coach”* (at least not someone who would work directly with and advocate for the child according to his individual demonstrated needs). There are just so many variables involved. Especially since this boy’s issues have gone unrecognized for so long, it’s pretty much impossible to say where one should “start.” I know that there are autism and Asperger’s Syndrome support groups for families abounding and easy to access via the internet (public schools won’t supply any info about any services not directly related to what is offered by the school district, because if they indicate that they can’t/won’t give a student adequate accommodations within the school’s framework, it’s actually a violation of Federal IDEA law – though that is a whole other ball of wax). The fact that this poor kid slipped through the cracks for so long is a testament to the school system’s lack of ability to meet his needs, as far as I’m concerned. Does he live in the Portland area? If so, there is a very good resource center in NE Portland called the Swindells Center. They have volunteers (they might actually be paid nowadays) who are very friendly, knowledgeable, and will actually sit down with parents and give them an overview of information and a binder for organizing your child’s vital info, etc. If they are not in Oregon, the Swindells Center might be able to recommend similar entities in other states?

Other than that, I would say that the absolute first consideration for your friend’s nephew at this juncture should be to address any potential mental health complications that he might be experiencing. Autism (especially if it’s been undiagnosed) can be associated with depression, anxiety, even PTSD (if he’s experienced bullying, etc.), and it is hard to make any progress toward or decisions about the future without first getting a handle on issues of the present. Also, I imagine his parents are likely experiencing a lot of grief and confusion. Even though autism is not a “terminal” condition, receiving news like this can feel like facing impending doom. It summarily dismantles all of your hopes, dreams, expectations, and assumptions about who your child is and who he might someday be (which is not necessarily bad, just totally different), and so I would recommend that the parents consider therapy for themselves to help them process their fears, grief, etc.

Finally, the one “service” that has made the hugest difference for Matthew as far as helping him develop skills in self-awareness and acceptance, modulating emotions, and problem-solving/flexibility has been Equine Assisted Psychotherapy. Matt was 15 when he started EAP, so your friend’s nephew might really be ripe for something like this – i.e., doing empowering work that is all about him (?). EAP practitioners are not state-licensed therapists (which, believe me, speaks more to the intractability of our government than to the effectiveness of such programs), so they won’t be covered by insurance. Some might charge on a sliding scale.

Wow. My heart really goes out to your friend’s nephew and his family. The days and years ahead for them may be really hard, but things also might finally start making sense for them, you know? They will be able to move from a place of mystery and darkness to a new kind of hope and light that they might never have imagined. The journey definitely has its rewards…

I hope my manifesto here has actually been helpful in some way.

My favorite authors for comprehensive, practical information are:

1. Tony Atwood (premiere authority on Asperger’s Syndrome)
2. Temple Grandin (describes her own challenges with HFA and advocates for kids on the spectrum)
3. Michelle Garcia Winner (her specialty is “social cognition”)

Let me know if you have any other questions!

Steph

*By God, there should be!