tag:blogger.com,1999:blog-4824082158385477117.comments2012-04-12T11:36:31.028-07:00Autism, Epilepsy and Self-Injurious BehaviorKim Oakleyhttp://www.blogger.com/profile/12462216625513839942noreply@blogger.comBlogger100125tag:blogger.com,1999:blog-4824082158385477117.post-32447914775738690712012-04-11T17:08:37.321-07:002012-04-11T17:08:37.321-07:00I am autistic. I have looked up many descriptions...I am autistic. I have looked up many descriptions of autism from mild to profound. I am going to write my own diagnostic criteria based on myself and my research. I will put my criteria on my website. If there is a way to influence the APA&#39;s criteria let me know. My website is http://www.thisisautism.net. My criteria will definitely include SIB. I will have an epilepsy specifier [i.e. Autistic Disorder with Epileptiform Seizure Disorder[s]]. Since SIB can be triggered by seizures I might have it as a specifier on the SIB section [i.e. Autistic Disorder with SIB triggered by Epileptiform Seizure Activity].Laura Bhttp://www.blogger.com/profile/15671055987303922471noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-74520379475755969362012-04-11T16:43:40.558-07:002012-04-11T16:43:40.558-07:00I am autistic. I have had past caregivers that fi...I am autistic. I have had past caregivers that fit these descriptions. My current caregivers are the best ones I have ever had and they fit these descriptions as well. I am going to print this out and highlight which ones fit each of them. I have thought something is not right with them but I couldn&#39;t figure out what it was.Laura Bhttp://www.blogger.com/profile/15671055987303922471noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-80551557617408394332012-04-10T21:00:40.167-07:002012-04-10T21:00:40.167-07:00Kim - God bless you, your son and your loved ones....Kim - God bless you, your son and your loved ones. I appreciate the blog you wrote about my brother Van, and the plight we have been through with the state Department of Developmental Services and the Office of &quot;Un&quot;Protective Services. It has been hell, but we are now in senate hearings and the investigative stage of my brother&#39;s homicide....but the suspect still works at Fairview.<br /><br />May God keep his hand on your shoulder....<br /><br />larry Ingraham<br /><br />See &quot;Manner of Death: Undetermined&quot;<br />or just enter Van Ingraham or Larry Ingraham in your browser.<br /><br />larryoflamesa@cox.netlarryoflamesahttp://www.blogger.com/profile/12582551367230677524noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-54722076912708729212012-04-10T14:13:33.755-07:002012-04-10T14:13:33.755-07:00God bless you, Kim.......and may God keep his hand...God bless you, Kim.......and may God keep his hand on your shoulder......Larry Ingraham, Van&#39; s brother. Larryoflamesa@cox.netlarryoflamesahttp://www.blogger.com/profile/12582551367230677524noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-41203645337128317622012-04-02T16:55:41.094-07:002012-04-02T16:55:41.094-07:00My heart melts at your brother&#39;s story. Thank ...My heart melts at your brother&#39;s story. Thank you for your encouragement even in the midst of your very powerful struggle. What is meant for evil God can turn for good. He will bring justice to your case. There are things hidden that will be revealed. Blessing and hugs and all our prayers for to you and your family. You are the best brother Van could ever have. I will remember your words that angels are with us because it is indeed hard to live by faith.Kim Oakleyhttp://www.blogger.com/profile/12462216625513839942noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-29960907233384347092012-04-01T12:30:02.599-07:002012-04-01T12:30:02.599-07:00Kim - Thank you for your words about Van&#39;s sto...Kim - Thank you for your words about Van&#39;s story, and God bless you! You do know you have an angel in your midst in your son, right? My angel was taken, but not in vain. Since Van&#39;s neck was broken, many changes in the system have begun to occur benefiting the disabled....and I have been blessed with a much closer connection with our wonderful Lord. What no one knows is, that the night Van finally passed away, it was magical. Van had been lying there for five days, unable to move, scared, and suffering. So I began praying my most heart felt prayer...&quot;Dear Lord, please take my brother this moment...&quot; That was at 11:36 P.M. June 11th. The instant I said this, Van exhaled, and did not inhale again. Then, like magic, I felt something ....someone....come past me, to my brother, and take him, his spirit, away from his distorted, twisted little body.....and it was amazing. I had been blessed with proof of our wonderful Lord, even though we are supposed to live in faith. I experienced God that night, thanks to my brother Van, and I knew I had been in the presence of an angel in Van. You are in the presence of an angel as well, Kim... always remember that...<br />The battle continues with the state and trying to get justice. I testified at a senate hearing a few weeks back on how the state does not investigate abuse and deaths of the disabled. If you want to read more, just type in your browser &quot;larry Ingraham&quot; or Van Ingraham&quot; and you&#39;ll get all the web sites.... May God keep his hands on your shoulders..larry Ingrahamlarryoflamesahttp://www.blogger.com/profile/12582551367230677524noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-90672227730046420072012-04-01T11:31:24.684-07:002012-04-01T11:31:24.684-07:00hi i am young girl with high high functioning auti...hi i am young girl with high high functioning autism i seee your pain and struggles i have heard the finding a way for people with non verbal autism to speak.... i am thinking its not mental but maybe he has bad dreams or something upset him in the night i know i myself am sensitive to many things and have some heightened senses....i dont know how resolve it but maybe if he had a way like pictures to express his pain....then again i am no psychologist....Nikkihttp://www.facebook.com/PrettyNikkixoxnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-34546667083301031492012-03-26T19:10:25.720-07:002012-03-26T19:10:25.720-07:00We started using 1/4 of a 7mg patch just a couple ...We started using 1/4 of a 7mg patch just a couple weeks ago...we have slowly moved up to now a full 7mg patch. Wow...it really works. My son has intractable epilepsy...fancy wording for...the doctors can&#39;t control it with medication. He is still on Lamictal...because it atleast got rid of the aggression and made him much happier...but he still as of January was showing atleast 1000 complex-partial seizures a day and 1 grand-mal per day. Needless to say, since starting the nicotine patch...we have seen amazing things. He is happily playing with toys like we&#39;ve never seen. He isn&#39;t just wandering the house, or rocking on his bed or the couch...he is engaging and interactive. Soooo happy. Listening to directions and even gave me a push on the swing today...amazing.Our Little Rock Starshttp://www.blogger.com/profile/01816181913762624081noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-59699833607559702372012-03-18T10:00:57.402-07:002012-03-18T10:00:57.402-07:00Excellent list and thank you for the links!Excellent list and thank you for the links!Autism Momhttp://www.blogger.com/profile/07129097090573163094noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-42475815037187889472012-03-15T20:33:50.242-07:002012-03-15T20:33:50.242-07:00Thank you for letting us know about marinol helpin...Thank you for letting us know about marinol helping your son with SIB. It is definately a consideration, in the event his SIB has a spontaneous remission or he stops eating again (which he does from time to time). I&#39;m hoping USA will have sativex available, as well, since it&#39;s higher in CBD&#39;s. I&#39;m so glad this helped your son! It sure beats anti-psychotics.Kim Oakleyhttp://www.blogger.com/profile/12462216625513839942noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-66997325770703089862012-03-15T16:03:20.998-07:002012-03-15T16:03:20.998-07:00Our son has autism, SIB, and is severely mentally ...Our son has autism, SIB, and is severely mentally disabled. A few years ago, I begged our doc for Marinol, a pill form of cannibis, for our son. She had me do research and bring it into her. She prescribed it, he went from wearing a karate sparring helmet with face shield, to just a light pair of glasses to remind him to not touch his eyes. He is now 18, and is doing much better on it. She has also prescribed it to several of her patients since then.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-35045481999413152782012-03-08T17:42:59.295-08:002012-03-08T17:42:59.295-08:00This is such an unfortunate event. I hope that the...This is such an unfortunate event. I hope that they can remedy that.fredericksburg dentisthttp://fredericksburgdentalexcellence.com/noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-51449822068107698762012-03-04T14:48:07.444-08:002012-03-04T14:48:07.444-08:00Very sad story Kim. Thank you for highlighting thi...Very sad story Kim. Thank you for highlighting this and providing the link to the California Watch investigative report. I agree with you about the need for surveillance in all areas of facilities providing care to adults with severe autism and others with serious communication deficits. I have commented on the story and your commentary on it and provided a link to a Newsday account from 2007 of the aggravated assaults by attendants on a Uniondale New York severely autistic woman discovered because of surveillance cameras. <br /><br />http://autisminnb.blogspot.com/2012/03/justice-severe-adult-autism-reality-in.html<br /><br />Thank you once again for the great efforts you make in raising awareness of severe autism issues including adult autism issues. Thee aren&#39;t many speaking honestly on these issues as you do.Autism Reality NBhttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-76835574572110688052012-03-02T21:28:47.213-08:002012-03-02T21:28:47.213-08:00I am in tears after reading this. My son is 9, an...I am in tears after reading this. My son is 9, and not autistic, but he has severe brain malformations and developmental delay. This past year he started punching himself in the face, so hard that he regularly splits his lip and gets black eyes, and even chipped his front tooth. His school has been fantastic, and is very proactive about trying different methods to reduce the behavior. They&#39;ve had some luck with a pressure vest and wrist weights for proprioceptory input. Unfortunately, at home, these tools are ineffective. He seems to hit most when he&#39;s around me. We&#39;re at the point of trying arm splints to at least minimize the force he can generate. Doctors have been stumped--the best they could offer was a prescription for anti-psychotic drugs. I will keep following your blog. From one desperate mom to another, here&#39;s hoping we can find a way to keep them from hurting themselves.Bethhttp://www.blogger.com/profile/05150906457308368532noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-85276180205284369862012-02-26T09:45:50.403-08:002012-02-26T09:45:50.403-08:00That DSM can sometimes lead physicians down the wr...That DSM can sometimes lead physicians down the wrong path is not new with DSM-V. DSM-IV lead to a false epedemic of bipolar in children; a forty (40) fold increase!<br /><br />Aggressive or violent behaviors in some autism (and bipolar) patients have been successfully eliminated with non-psychotropic drugs.<br /><br />Search on keywords &quot;adrenaline system overreactivity ankenman&quot;.Dr. Ralph Ankenmanhttp://www.blogger.com/profile/08538086043420941291noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-63313629370805492922012-02-23T09:45:19.853-08:002012-02-23T09:45:19.853-08:00Dear Kim My name is Claude. I am the mother of Joa...Dear Kim<br />My name is Claude. I am the mother of Joaquim, who has High level autism, and also a psychiatrist. In France, there are child psychiatrists who uses a treatment called &quot;packing&quot; to reduce SIB. This means completely wrapping the patient(usually a child with severe SIB)in a first layer of 10 to 15 degrees celsius cold sheets then adding several layers of normal temperature wrapping. The cold sensation lasts less than 30 seconds and is followed by a vasomotor reaction of warmth. This procedure(which is repeated several times) has frenquently but not in all cases produced reduction or suppression of SIB.<br />Some parent associations want to ban this treatment which they consider to be physical abuse. This is very unfortunate because there are indeed cases which are beyond CBT +/- neuroleptics. Pierre Delion, a renowned child psychiatrist in France does research on and practises packing in Lille, France.<br />Please feel free to contact me at claude.catot@laposte.net.<br />Sincerely yours<br />Claudeclaude catotnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-42926011112316447562012-02-20T14:46:23.038-08:002012-02-20T14:46:23.038-08:00Keep speaking the truth Kim!Keep speaking the truth Kim!Autism Reality NBhttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-75255939741995689622012-02-17T15:30:01.142-08:002012-02-17T15:30:01.142-08:00It&#39;s great there are many autism researchers a...It&#39;s great there are many autism researchers and professionals who work with autistics who suffer from self-injurious behavior that are speaking out about the proposed changes. More of their voices and expertise should be heard. They are the real expert professionals, since that is their speciality. Catherine Lord does not specialize in autism and self injurious behaviors.Kim Oakleyhttp://www.blogger.com/profile/12462216625513839942noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-28812767350458436092012-02-15T08:15:34.468-08:002012-02-15T08:15:34.468-08:00Great list that emphasizes being pro-active as wel...Great list that emphasizes being pro-active as well as checking all possible issues should an autistic child exhibit self-injury. It also makes us painfully aware that it could be almost anything that triggers such behavior.Autism Momhttp://www.blogger.com/profile/07129097090573163094noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-71383370458225895432012-02-12T22:21:37.212-08:002012-02-12T22:21:37.212-08:00There are many in the mental health community who ...There are many in the mental health community who are upset with the proposed DSM-V and we have written petitions etc. It may not change the final draft but we can only hope that it will...in addition to changes in this area, the proposed DSM-5 will label those who are depressed 2 weeks after the death of a loved one with major depression. I would have fit that one...oh and ADD/ADHD is going to be expanded so just about anyone would fit the proposed criteria. I think they need to throw the whole DSM-V out, keep using the DSM-IV and get different people working on it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-77005218733311791672012-02-03T07:36:42.776-08:002012-02-03T07:36:42.776-08:00Kim: You are the only other person I have seen wh...Kim:<br /><br />You are the only other person I have seen who has noticed that some professionals like to &quot;cherry pick&quot; who they work with. This is one of the main reasons I am homeschooling my severe child now. The professionals were a bigger source of stress than help-the opposite of therapeutic. I think the ideal is &quot;passive,flexible and high functioning&quot; even in some NT classes and this intensifies in the SE classes. My son is never all three of these, but I don&#39;t feel that anyone is. Yet, some seem to expect this severely autistic teenager to adapt to constantly changing scenes and schedules and &quot;feel resentful and terrified&quot; when he can&#39;t handle these ( to use your words!). Thanks for your post and the chance to vent myself to someone who understands..Bethnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-5715697663543576592012-02-01T11:51:47.380-08:002012-02-01T11:51:47.380-08:00Thank you for posting on this important subject.Thank you for posting on this important subject.Autism Reality NBhttp://www.blogger.com/profile/05838571980003579163noreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-42333799766804650802012-02-01T11:37:31.251-08:002012-02-01T11:37:31.251-08:00A very interesting article. I only know the autism...A very interesting article. I only know the autism you refer to as opposed to those with high functioning autism. I was completely unaware of this new classification and the so called authorities on the matter and their seeming denial of severe autism.Rina dhadranoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-52913721081100678792012-01-15T04:39:51.517-08:002012-01-15T04:39:51.517-08:00You know the problem with a lot of these studies i...You know the problem with a lot of these studies is that a lot of them don&#39;t use subjects such as your son. They use children who have high functioning autism. I have Asperger&#39;s Syndrome, which will be absorbed into &quot;Autistic Spectrum Disorder&quot; in the DSM-IV but I think it&#39;s rather apparent that people such as myself and your son are vastly different! Unfortunately I fear the re-definition will only work to marginalize those such as your son more.<br /><br />I think you and other parents with children such as yours should form a very vocal advocacy network for non-verbal autistic individuals and really put the pressure on research institutions to do some worth while studies. One way you might do this is to give talks to graduate students because they often need unique research for their thesis.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-4824082158385477117.post-69240830764112628472011-12-08T10:56:36.040-08:002011-12-08T10:56:36.040-08:00This is because Autism is the diagnosis du jour. I...This is because Autism is the diagnosis du jour. In the battles for funding, and &quot;publish or perish&quot; if &quot;Autism&quot; is in the title the odds for funding and publication increase tremendously in the researchers favor.Anonymousnoreply@blogger.com