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Tero Toivanen

Facing Autism in New Brunswick: Autism Taboo: Shhhh! Don't Mention THEM! - 0 views

  • It is now politically incorrect to refer to anyone as mentally retarded. The polite and proper term to use now is intellectually disabled. Either way there is very little mention of the fact that many persons with Autism Spectrum Disorder diagnoses are severely intellectually challenged. In the world's autism communities there are many who perceive it as an insult to mention the existence of the intellectually disabled autistic population.
  • some well known autism researchers work hard at showing the world how intelligent autistic persons really are, even those who cannot demonstrate that intelligence with any obvious ability to communicate or function in the real world.
  • The mere mention of the existence of low functioning autistic persons with serious intellectual challenges is forbidden.
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  • The exclusion by autism self advocates of the intellectually disabled autistic population occurs despite the fact that many persons with Autistic Disorder are intellectually disabled. The ICD-10 mentions this fact expressly in its description of Autistic Disorder:
  • Autistic Disorder...In addition to these specific diagnostic features, it is frequent for children with autism to show a range of other nonspecific problems such as fear/phobias, sleeping and eating disturbances, temper tantrums, and aggression. Self-injury (e.g. by wrist-biting) is fairly common, especially when there is associated severe mental retardation.
  • All levels of IQ can occur in association with autism, but there is significant mental retardation in some three-quarters of cases.
  • There are more than 200 known causes of intellectual disability. Some common examples of intellectual disability are: Down syndrome Autism
  • The attempt by higher functioning persons with ASD's and Aspergers to disassociate "autism" from intellectual disability helps stigmatize persons with intellectual disabilities including the many persons with autistic disorder and intellectual disabilities.
  • And some ND's, to counter the fact that most with LFA are retarded, some "famous" autistics like to promote FC as "proof" that they aren't.
  • My cousin is profoundly autistic. He is around 20 and cannot communicate at all, not verbally or in the written word, and has never said a word. Luckily, his family is smart enough to know that if anyone tries use FC on him they will know it is a scam.If a facilitator told my aunt that P was writing poems and understood Shakespeare she would just laugh. She loves P as he is; she knows reality and doesn't try to force him to be someone he isn't.
  • The current Wikipedia article still shows a frequency of 25-70% incidence of mental retardation in people with autism.
  • Yet, the reader is drawn to see not the high percentage (25% is still very high) but the width of the range, therefore there must be something wrong with the ability of standard tests to measure "autistic intelligence".
  • Mentally retarded IMO comes from the intelligence scales. These do not address the learning styles of all people and are inflexible. I do believe there are better ways to understand how someone learns. I also don't believe there are limits on what we learn, the brain's placisity allows us to learn our entire life.
  • I've spoken hundreds of parents and it worries me that so many have problems accepting their children as they are and will be.For some intelligence is the magic word, a kind of hidden cure inside their child.But autistic kids with a normal IQ which they can use function better than those with high IQ's they can't use.
  • I am only concerned about the cases where the FC person NEVER does ANY kind of independent work, which seem to be the majority of FC cases.
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    It is now politically incorrect to refer to anyone as mentally retarded. The polite and proper term to use now is intellectually disabled. Either way there is very little mention of the fact that many persons with Autism Spectrum Disorder diagnoses are severely intellectually challenged. In the world's autism communities there are many who perceive it as an insult to mention the existence of the intellectually disabled autistic population.
Tero Toivanen

Facilitated Communication - 0 views

  • Facilitators who work closely with individuals with autism, as well as other developmental disabilities (e.g., mental retardation, cerebral palsy, etc.) report that individuals with little or no language are fully expressive about life experiences, thoughts, feelings, choices, preferences, and decisions, when allowed to communicate through facilitation.
  • Biklen and other proponents of facilitated communication have been strongly opposed to objective, empirical validity testing. They maintain that testing undermines the individual's confidence, places him or her under pressure, and introduces negativism that destroys the communicative exchange.
  • Rather, under the surface of autism is a person with full cognitive faculties. Smith and Belcher (1993) indicate that much of this suggests a basic unwillingness on the part of families, professionals, and caregivers to accept the individuals with disabilities for what they are, thus diminishing the value of the individual in a way that the disability itself could not have.
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  • Thompson (1993) describes facilitated communication as a classic example of the self-fulfilling prophecy. The facilitator wants to believe that the person with a severe cognitive and language disability is actually of normal to superior intellectual ability. Parents especially want to believe that a way has been found to finally unlock the door to their real son or daughter.
  • In short, people want facilitated communication to work.
  • Advocates of facilitated communication often respond to naysayers, "It can't hurt to try it." Biklen agrees, "It is not harmful to teach people to communicate through pointing." However, he qualifies his claim with the caveat that "it can be harmful if the facilitator over interprets, does not monitor the person's eyes, facilitates when the person is looking away, is not sensitive to the possibility of guiding the person, and asks leading rather than clarifying questions."
  • Some argue that "false communication" may distort beliefs, understanding, and rehabilitative approaches to persons with autism and other developmental disabilities.
  • Additionally, facilitated communication in the past few years has been the source of many contested abuse allegations, usually allegedly reported by an individual with very limited unassisted communication skills against a family caregiver or caregivers.
  • There are at least 50 legal cases in the U.S. involving allegations of sexual abuse produced through facilitated communication (Berger, 1994). Several such cases have already occurred in Australia, and some have arisen in Europe (Green, 1992).
  • With the exception of three empirical studies (Intellectual Disability Review Panel, 1989; Calculator and Singer, 1992; and Velazquez (in press)) which provide preliminary validation of facilitated communication, most of the support for the validity of facilitated communication is based on anecdotal reports.
  • Unfortunately, validity questions surround anecdotal reports of facilitated communication. In general, these reports lack the controls necessary to rule out experimenter biases, reliability concerns, and threats to validity (Cummins and Prior, 1992; Jacobsen, Eberlin, Mulick, Schwartz, Szempruch, and Wheeler, 1994).
  • Although Biklen (1990) admits that facilitator influence is a real possibility, facilitated communications are typically reported as though they are the words of the person with a disability.
  • Without exception, these empirical studies have questioned the authenticity of the communication as truly coming from the individual versus the facilitator.
  • Interdisciplinary Party Report (1988) and the Intellectual Disability Review Panel (1989) both of which examined the source of facilitated communications produced by persons in Australia, and found strong evidence that responses obtained through facilitation were influenced by the facilitator.
  • Gina Green, Director of Research for the New England Center for Autism and Associate Scientist for the E.K. Shriver Center for Mental Retardation, Inc., has reviewed over 150 cases where empirical testing was performed and cites 15 independent conduct evaluations involving 136 individuals with autism and/or mental retardatiion who were alleged to have been taught to communicate via facilitated communication. In none of the cases were investigators able to confirm facilitated communication by the 136 individuals.
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    Facilitated Communication by Natalie Russo [First Published in Quality of Care Newsletter, Issue62, January-February 1995]
Tero Toivanen

Facing Autism in New Brunswick: Evidence of Common Genes Linking Autism Spectrum Disord... - 0 views

  • genetic mutations in the SHANK2 gene, partially responsible for linking nerve cells,  and variants in the number of gene copies that were common to patients with autism and patients with mental retardation.
  • the same mutation can be present in an autistic patient with normal intelligence and in a mentally impaired patient
  • Our findings further link common genes between ASD and intellectual disability.
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    Link between Autism and intellectual disability?
Tero Toivanen

Facing Autism in New Brunswick: Intellectual Disability Acceptance in the Autism Community - 0 views

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    In this blog says: approximately 75-80% of persons with Autistic Disorder are intellectually disabled or cognitively impaired.
Tero Toivanen

A week ago, a new study published in the Archives of General - 0 views

  • The Howard Hughes Medical Institute describes how researchers using "high-throughput gene sequencing technology" were able to identify several de novo or spontaneous gene mutations in 20 children with sporadic autism spectrum disorders -- that is, their family members showed no other sign of autism.
  • The team identified 21 spontaneous mutations -- meaning they weren't inherited from either parent -- in the children's DNA. Eleven of these were mutations that would alter the protein encoded by the affected gene. In four of the 20 children, the researchers found mutations that were severe, some of which have been previously linked to autism, intellectual disability, and epilepsy.
  • one child had a mutation in the GRIN2B gene, which is crucial for neuronal signaling.
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  • Another individual had an extra nucleotide in FOXP1, a gene that, along with its close relatives, has been heavily implicated in language defects.
  • These new findings support the 'multi-hit' model of autism, which suggests that having more than one mutation can cause or worsen symptoms of autism and other brain disorders. The different combinations of mutations may contribute to the heterogeneity in ASDs.
  • That such different combinations of genetic mutations contribute to a child being autistic could account for why individuals with an ASD diagnosis have some very similar, and very different, features.
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    "The Howard Hughes Medical Institute describes how researchers using "high-throughput gene sequencing technology" were able to identify several de novo or spontaneous gene mutations in 20 children with sporadic autism spectrum disorders -- that is, their family members showed no other sign of autism."
Tero Toivanen

Why Asperger Syndrome Will Disappear - 5 views

  • The American Psychiatric Association (APA) is now in the process of developing and finalizing the new Diagnostic and Statistical Manual of Mental Disorders (DSM) Version 5.
  • autism spectrum disorders as we know them will change radically, and many people who are now considered to be "autistic" may find themselves with a brand new diagnosis.
  • Unless something changes between now and then, as of 2013, Asperger syndrome will no longer exist as a diagnosis.
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  • A person with present symptoms of Asperger syndrome would fall in the diagnosis of Autism Spectrum Disorder, and we would expect there to be additional specifiers like "without intellectual disability", "with fluent speech", etc., which we believe will better describe the diagnostic picture for such a person than is currently done with the term Asperger Syndrome alone.
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    "Unless something changes between now and then, as of 2013, Asperger syndrome will no longer exist as a diagnosis."
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