Customer Reviews

I Don't Want to Be Inside Me Anymore: Messages from an Autistic Mind

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The introduction to this book extols the amazing breakthrough of facilitated communication, which has supposedly enabled Birger Sellin, a severely autistic and non-verbal young man, to communicate the genius trapped inside him in the ensuing poems.

It omits to mention that every controlled study of facilitated communication has found that the messages almost invariably (more than 99% of the time) come from the hand of the facilitator, holding the autistic person's hand over a keyboard, in some cases forcibly, not from the person with autism.

In passing, the introduction casually mentions that since facilitated communication was started with Birger Sellin, his screaming fits, tantrums, and other displays of extreme distress seem to be getting worse, especially when he is "typing". No one around him seems to have wondered why.

Well worth waiting for Amazon to locate! I'm the mom of a 5 yr old blind autistic daughter who has only recently begun to connect to the world. This book has been a blessing in terms of helping us understand the unique lonliness of the autistic condition and gives profound insight into the emotional experience of a nonverbal autistic person. I highly recommend this book for anyone who cares about an autistic person. It is not an easy read-- often painful and disturbing.

The world of facilitated communication is certainly one of controversy and Birger's writing add to that controversy. But FC has been used for years with those with impulse control disorders who have Cerebral Palsy. Many in that group were considered for decades to be mentall retarded and incapable of their communications using assisted typing as is the case with FC. The real question is not whether FC is a valid communication for some people but whether, like those with CP, some severely autistic people can be deemed to have impulse control disorders such as Dyspraxia, OCD or Tourette's and this is certainly the case that whilst many, especially at the more able end of the spectrum, do not, others certainly do. The other question is whether someone with Autism who has a severe impulse control disorder can also be as intelligent, deep and artistic as any person with CP who uses FC to express the same things. Quite simply, if we assume they don't then we are committing the same sin society committed in the dark past against those with CP and the deaf. Whatever you think of the politics or your own take on autism, it is still possible to acknowlege that someone with a severe impulse control disorder and autism may feel they suffer more from their autism than someone who does have control of their body, their movements, their communication. Birger's poetry in that context is an appeal to humanity to listen to a trapped intelligence and passion. If we put our politics aside, maybe we'll here not the disability, but the person.

The opening of this book annoyed me. The very statements that people on the autism/Asperger's (a/A) spectrum don't relate to others and that nothing registers are not only illogical, but are harmful fallacies. People with autism, which is a neurobiological condition have difficulty communicating and responding to sensory stimuli based on the severity of the condition. Suggesting that nothing registers with people who have autism is a crock.

I also didn't like the way people with autism were compared to Rain Man. Seriously, I wish that 1988 movie had never been made because I am really sick of the savant stereotype being dumped on the autistic population! The term "Rain Man" has become a slur in many a/A circles for this very reason. The irony of it all is that savantism only affects less than 10% of people with autism! I also wish I had an umbrella with the Autism Puzzle design, with the logo "Rain Man Busters" to ward off these tired misstatements. Saying one knows about autism based on one fictitious character is tantamount to saying that one is a gourmet chef because they watched one program about cooking!

Tired, disproved myths about autism such as refusal to speak due to trauma and having no desire to communicate were rampant throughout this book. Bull manure! The desire to communicate is inherent in all people regardless of neurobiology and autism affects that part of people's lives. The irony of it all is that Dr. Asperger, the man who first described this form of autism in 1944 wrote many works IN GERMAN about it as well as its spectrum partner, autism. When Birger was born in 1973, the ironic claim that "little about autism was known in Germany" at the time is all the more reason to question the veracity of this book. Niko and Elisabeth Tinbergen's writings are cited and they, too have touted questionable claims. They support the asinine and disproved "refrigerator parent" theory and claim that forcing people with autism to endure hugs against their will is a sure-fire cure, which it most emphatically is not. If such were the case, then "curing" autism would have a 100% success rate!

Many parts of this book really bothered me. The "facilitated communication" technique is praised throughout the book as the key to Birger Sellin, an individual with severe autism. Sellin is nonverbal and has allegedly been able to communicate via poetry through this method.

There are too many unanswered questions about facilitated communication. This book fails to mention that in the majority of cases, the facilitator's hand is typing the messages and that it is the facilitator's thoughts that are being expressed, not those of the person with autism. In 99% of the controlled studies performed on this method of communication have shown this to be the case. In many instances, the facilitator forcibly holds the person with autism's hand down on the keys to make it appear that the the person with autism is doing the typing.

Small wonder Sellin's meltdowns and extreme frustration appear to be exacerbated since the advent of facilitated communication in his life. One wonders if Sellin is actually doing the typing. At no time are these questions addressed in this book.

Don't just take this with a grain of salt. Take it with a whole BOX of salt!