Tag Archives: Daily Living Skills

Why I Can’t Live Independently

I was asked the question again, on a Facebook group for parents of bliknd/autistic children (where I share my perspective as a blind/autistic adult). When people realize I’m above-average intelligent and verbal, they often ask why I can’t live independently. That is, unless they, like my therapist, assume that no blind person can. She originally had it written into my treatment plan that, if I had not been blind, I would’ve been able to live independently with outpatient support. I had this removed because it quite likely would’ve impacted my funding.

Honestly, it is quite a painful question for me. I have somewhat suppressed the memories of the time when I did live on my own, and don’t really like to think of that time. Then again, I have to if I want to clarify my support needs.

I couldn’t live on my own back in 2007, when I tried, because I had terrible meltdowns in which I’d become self-injurious and aggressive, and I wandered. I also couldn’t do daily living tasks because I needed very clear instructions and needed lots of one-on-one instruction. I lived in an independence training home prior to this and got lots of instruction there, but I got overwhelmed very easily and had meltdowns etc. then. I was more or less kicked out of the independence training home because of my meltdowns.

In addition, I have mild motor deficits. I don’t know whether this is the cause of my inability to perform simple daily living tasks like putting a topping on my bread, but I can’t do these things. My gross motor skills are better, so I can technically operate a vacuum cleaner for example, but I get overwhelmed by the noise so much that I either forget where I was vacuuming or shut down completely. Vacuuming and sweeping are not the problem, as blind people in the Netherlands generally get fudning for a housekeeper to do these tasks. Unless, that is, you have a partner who is non-disalbed, but then again my husband has to do all the cleaning now that he lives alone, too. Same for cooking, so these are not a problem.

It is really hard to put into words what went wrong when I lived on my own. Yeah, I had meltdowns and wandered, but, as an intelligent person, can’t I just control those behaviors? With medication (including a high dose of an antipsychotic), these behaviors have become less frequent, but other than that, I’ve found nothing that helped me. The meltdowns and wandering still occur regularly enough that it’d be a safety issue if I lived independently again. Besides, the fact that I have 24/7 support available should I need it now likely causes the meltdowns to be less frequent. I have learned to delay my need for assistance, but still ultimately need a good deal of assistance during the day. Besides, in cases of (perceived) emergency, I just need to be able to reach someone. And you might say my perception of emergencies is screwed, but when I’m sensorially and/or cognitively overloaded, I can’t make that judgment. Oh, did I mention I can’t get myself out of my husband’s apartment safely using the stairs, which I’ll need to in emergency cases? I could likely learn this, but I’d need a fair amount of instruction. I do know the stairs and don’t know whether I could walk them without falling if I didn’t get assistance. For those who’ve seen me walk the stairs at home fine, these are firstly different (indoor) stairs, and secondly my motor deficits have gotten slightly worse.

When I write this, I can hear the judgment of certain people, including possibly certain readers, in my mind. Some people may want to minimize my support needs because they are in denial. Others mighht want to discredit my opinions, for I am allegedly not like their child. I was going to write about all the unsafe situations I’ve been in (and not just unsafe as perceived by me) because of lack of support, but I think it’s pointless. It hurts too bad to think of these, and most likely people aren’t going to change their perception of me unless they genuinely want to, in which case the above paragraphs should suffice.

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Diagnonsense: Blindness and Autism

Today was treatment plan review time again. This inevitabley means that my diagnosis needs to be reviewed too. Last September, this meant a change of diagnosis from dissociative identity disorder and PTSD to borderline personality disorder. I also have a diagnosis of autistic spectrum disorder or Asperger’s depending on which professional you ask. The details of this diagnosis – whether it’s Asperger’s, autism spectrum disorder, or something else along the spectrum entirely -, don’t bother me. What does bother me is the constant questioning about whether I truly am autistic or all my difficulties are normal for someone who is blind.

I have read a fair amount of information on this, and it is true that blind and autistic people display overlapping behaviors. For example, many blind children (but not most adults) flick their fingers in front of their eyes or rock back and forth. These “blindisms” are also common in autistic people. Blind people also can’t use visual cues to communicate. This led my therapist to assume that all blind people are clueless about for example sarcasm used in speech. Generally, it is recommended that the criterion on non-verbal commnication be left out of the equation when deciding whether someone who is blind meets the criteria for an ASD.

I don’t care about this single criterion as it isn’t the only one in the diagnostic manual. What I do care about, is when underlying mechanisms of autism are attributed to all blind people. For example, my therapist said that all blind people have trouble keeping sight of the big picture. This may be so to a certain extent, in that all blind people again miss visual cues, but it isn’t like all blind people have no clue how to generalize daily living skills from the training facility or parental home to the independent living situation. My support worker, who had extensive experience with blind people, told me when I moved into independent living from her training home that I could obviously clean my apartment, as “a bathroom is a bathroom”, etc. To me, it certainly isn’t. Similarly, most blind people beyond early childhood don’t get overwhelmed by noise. This again led to a horrible misunderstanding when I, early in my independent living experienece, had a meltdown over a fire truck driving by.

Now I don’t care what my diagnosis is as long as I get the right support, but this is exactly where questioning my autism diagnosis is problematic. People with only a mobility or sensory impairment cannot get support. They can get a housekeeper, but they can’t get anyone to help them organize their lives or navigate social or practical situations.

A general rule is that, if normal strategies for the blind do not work, there has to be something else going on. I’ve lived in enough facilities for the blind to know my behavior clealry isn’t normal for a blind person. In fact, it was the staff at the training home who first sought an autism evaluation for me. They didn’t seek this for all their clients. In the end, my current therapist also left the diagnosis untouched, but I get sick and tired of constantly having my needs questined. Of course, I know I truly have “preemie syndrome”, a constellation of neurodevelopmental problems commonly associated with premature birth, but this isn’t a formal diagnosis and won’t ever be one.