As many of you who read this blog know, I work in a state-run residential facility for developmentally delayed adults. Some of those adults are strictly mentally retarded (MR) while others have mixed diagnoses; all have MR, but some may also have autism, and others may have psychiatric diagnoses as well. I attended a exit conference for one individual, an adult diagnosed with Mild MR and autism, who is generally regarded as high functioning. He has no legal guardian and in fact, successfully argued (with the aid of staff psychologists and his appointed mental health attorney) in family court to prevent a family member from becoming his guardian. Despite that, his family remains quite involved in his care and has been on the forefront of getting him placed “in the community” closer to one family member’s home; he is quite independent and this would be situated such that he could visit with his family far more frequently. He was, in fact, accepted into the group home; the exit conference was a formality only.
Quite suddenly, the individual began displaying anxiety; his speech pattern became more rapid and repetitive, almost echolalic, with an increase in volume from normal conversational tone to near-screaming. He brought up many undesired behaviors he had exhibited in the past, and vowed to do them all over again; he sabotaged his own placement. While this was difficult to watch, it was not totally unexpected. This individual had, in fact ‘sabotaged’ a community placement opportunity a few years ago by the exact same means. A family member who was present at the meeting became exasperated. His clinical team tried in vain to slow down the verbal train which was speeding towards a fiery crash; an impasse if they were lucky. The group home staff, who likely had been made aware that these behaviors would resurface, tried to ‘talk him down’, but to no avail.
What’s at issue here? As many parents on the Spectrum know, anxiety is that demon that often undermines the best of plans and the best of intentions. Anxiety is that monster in the closet that hides until rearing its ugly head in the middle of the night, waking everyone in the household with irrational fears. Is it treatable? Of course. Imagine this for moment though: someone tells you (yes, you, not your autistic child) to take a pill to change your mood. You are an adult who functions fully without any help, and frankly has no desire to change your mood; you feel there is nothing wrong with your mood. And frankly speaking, who the hell are you to tell me what to take; I am an adult and can make my own decisions about my health.
All valid points; points that can be made by both the neurotypical and autistic individual. As advocates for those with autism, we would likely applaud this rationale, this particular response, as one that displays self-awareness and self-esteem. As advocates we also have the ability to access others’ wisdom and expertise in order to plan long-term, despite short-term fears. As someone who had no legal guardian, this individual has all the rights and privileges that other (neurotypical) adults enjoy. He can live wherever he chooses, even if that choice is one that others would consider a poor one. He can also refuse to take any medications despite its benefits. A mild anxiolytic might have been helpful in this instance. Weeks ago I had suggested to the family member that he might want to consider offering this individual an herbal supplement or beverage (Vitamin Water makes one) aimed at reducing anxiety/producing a calming effect, just for this exact circumstance.
What did this teach me, as a parent of an autistic child? It reinforced the need to do many of those things we don’t even want to think about, put on the back burner, but nonetheless need to be addressed: having a will, establishing a special needs trust, petitioning for guardianship, and applying for Medicaid and/or Social Security benefits. I know, why do those now? They don’t all need to be done at the same time but they all need to be done by the time they reach age 18. And, in the case of the guardianship process, this is a long and circuitous process that is designed to wear you down and discourage you. My advice would be hire a special needs attorney who will help you formulate a plan to tackle one item at a time. Then just keep moving forward.
We all want to be there to see our children grow to be successful members of society. We don’t want them to fall into situations that they can’t handle, or shouldn’t handle, on their own. We want them to be able to handle their futures with as little anxiety as possible.