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A small study suggests that at least 10 percent of children with autism overcome the disorder by age 9 - most of them after undergoing years of intensive behavioral therapy.
My neighbor (Kelly) searched tirelessly on the internet, researching her son's autism, possible causes and possible treatments. At 3 he would not make eye contact or speak and seemed to be in his own world. Kelly spoke and met with several doctors before deciding to try chelation of heavy metals from her son's system. After the third treatment he "switched on". He was suddenly aware of his surroundings, acknowledged the presence of others with eye contact and attention and began to speak. Perhaps, for some, nutrition, desensitization, increased weight or some other factors reduce the amount or effects of heavy metal sensitivity without formal treatment with that intent.
#1 - Fri May 8, 2009 5:20 PM EDTAutism and Medical Marijuana
Some families have found marijuana (mmj) to be nothing short of miraculous. Some of the symptoms MMJ has ameliorated include anxiety--even severe anxiety--aggression, panic disorder, generalized rage, tantrums, property destruction and self-injurious behavior.
"I know it's not the end all answer but it's been the best answer for the longest time for us in regards to ALL the other medications. I cannot tell you how many months we would go on a medication wondering if it was doing anything, anything at all. Here we can see the difference in 30-60 minutes guaranteed."
"My son (who is almost nine years of age) has been on medications to address his severe autistic behaviors including aggression and throwing fits over trivial issues in the environment. He has been difficult to instruct due to these behaviors. None of the medications has ever made a difference, except for making his behaviors worse. He has been through the whole range starting at three and a half with ritalin and dexedrine, and going through prozac, paxil, clonidine, naltrexone, adderall and risperdal. Finally, we gave up on medications and decided to manage his behaviors through behavioral techniques. We had mixed results.
A few months ago we tried the prescription drug Marinol and noticed a drop in the severe episodes, no fits and little to no aggression towards his teacher and family members on a daily basis. A few weeks ago we started him on cannabis and stopped the Marinol. He has been in a much better mood and is much easier to keep on task in the classroom now. There has not been a major fit since he started the Marinol, and the cannabis seems to work just as well with his behaviors and he is now much more easier for his therapists to manage during instruction.
It is not a cure, but just a tool to make things go smoother and prevent disruptions in his learning. He still has days when he gets angry and moody, but we can adjust the dose to help him through those days. It is such a mild medication and there are no long term side effects that can damage the body's organs. I feel much more comfortable administering cannabis) than something like risperdal.
Autism is an unpredictable disorder and even though major behaviors are constants, autistic people have different degrees of their behaviors from day to day. We can tell when he might need an extra dose to get him through a rough day, and due to the fact that there is no toxic overdose, we do not have to be overly concerned with safety issues."
--From a less stressed out mom
Some relevant stories:
MMJ for an 8 Year Old
Marihuana and Behavior Disorder of Uncertain Origin
So, you want to consider giving medical marijuana to your autistic son/daughter?
First question, is this legal in your state?
If mmj is legal, do you need a doctor's permission or "recommendation"?
A prescription for mmj is illegal, according to federal law.
It may be difficult to get your MD to write a letter or even sign a form for you stating that your child may benefit from medical marijuana. Even if your MD is willing to help you, he or she may want you to try a few pharmaceuticals first, although it is most likely that you already have given these the old college try, and have seen only limited improvement, if any at all. If you can't find a doctor willing to help, local AIDS awareness and advocacy groups may be able to recommend one. That this is for pediatric use is problematic, especially for a child with a disability. If your child has any co-morbid conditions or a seizure disorder, a physician's help is critical.
If you still want to try MMJ, the next step is finding a supply--and a supplier. Just because you used marijuana back in college doesn't guarantee that you will be able to scare up a dealer for your child's medical needs. Buying marijuana on the black market is expensive, dangerous and nerve-wracking. Any medicine you buy is also apt to be tainted. If it smells suspiciously like Raid, chances are excellent that you have scored a pricey version of this trusty bug killer.. If you are fortunate enough to live in a state with compassion clubs, then your problem may be solved. Some states allow limited cultivation.
Next issue, how will this medicine be delivered to your child? Probably an autistic child will not be smoking. There are several viable methods of delivery, tinctures, elixirs, baked goods, cannabutter and cannaoil). Cannaoil may be particularly useful if your child is gf/cf. Any recipe may be adapted using 2/3 oil for the amount of solid fat in the recipe.
Medical information:
GW Pharmaceuticals UK
well known Jamaican study
Useful sites:
State-by-State Medical Marijuana Laws
The American Alliance for Medical Cannabis
Marihuana The Forbidden Medicine, Lester Grinspoon M.D.
The Emperor Wears No Clothes, Jack Herer
Medical Marijuana Research
The National Organization for the Reform of Marijuana Laws
An Ethnographic Study
If your state allows cultivation:
Marijuana Botany, Rob Clarke
Marijuana Growers Handbook, Ed Rosenthal
I'm skeptical of the chelation therapy 1Friend speaks of, especially since it led to the death of a British autistic child. It is not a proven or safe therapy.
I do support early intervention and behavior modification, as they have helped my own son, who is nine and on the autism spectrum.
This study provides a glimmer of hope that therapies can help, but I wince when I hear parents like Jenny McCarthy claim that their children have "recovered" from autism. I don't know if that is even possible.
hi caroaber. actually it is possible and has happened. the human brain is capable of establishing new neural pathways ( this has been seen quite often where trauma is involved). autism spectrum disorders are primarily disfunctions and anomalies in neural transferrence in the brain. if these synapses can be restored or routed around, the effects of autism can be elliminated or greatly reduced.
the whole range starting at three and a half with ritalin and dexedrine, and going through prozac, paxil, clonidine, naltrexone, adderall and risperdal.
The "dr" prescribing such medication's at the age of 3 1/2 years of age is nothing short of actionable malpractice.
Shotgunning medication in an attempt to narrow the choices while dealing with a childs life is proof these "dr's" are barely beyond leeches & bleedings in their approach.
Take21a - It's not "actionable malpractice" if a reasonable doctor would prescribe similar medications in the same circumstance. And since many would, no jury would convict. Also, to have a malpractice case, there would have to be actual harm done. Finally, it should be "medications" not "medication's". It is plural not possessive in the way you've used it.
Chelation treatment is unsafe, and I've never seen any scientific evidence suggesting that marijuana is a safe or effective treatment for autism.
This study suggests that intensive behavioral treatment is effective - but it may be hard to get insurers to cover 30-40 hours/week of expensive care. I do think that some kids with particularly dangerous behaviors (headbanging, biting, etc) need pharmacological intervention. I just wish we had a single-payer system that could provide good care for ALL kids/adults with autism, not just the wealthy.
AND WE ALL NEED TO STOP BLAMING VACCINES FOR AUTISM - THERE IS NO EVIDENCE OF A LINK!!!
So let me get this straight.
You are promoting psycho-tropic drug medications for use in 3.5 yr old children. Is that right 'dr"?
LIZ:
I'm a speech-language pathologist who has seen the incidence of autism grown alarmingly over the years. I cannot tell you how many times I have heard parents say that their child was fine until after they were vaccinated. I've known of children who were affectionate, talkative, and afterwards were nonverbal and withdrawn. The US vaccinates multiples times more than any other nation in the world. I do not think that is the only factor; but do think there is a correlation, as well as a genetic propensity. I've met a beautifu lady who is an outspoken advocate for children with autism; and she has three children - all have been diagnosed with autism: Two boys and a little girl.
I know parents who have opted out of vaccinations for their children, and are completely happy with their choice. Anytime I'm told by the government or the medical field that there is nothing to fear, I get scared.
In every state there is an Early Intervention/First Steps, etc. program. It is Federally mandated that children with developmental delays be funded therapies (speech/occupational/physical/developmental) and receive medical care. Why you say this is not available, I don't know. It is the lower extension of Public Law 94-142 (Individuals with Disabilities Act: IDEA); and it provides an opportunity for children who need help just as in these circumstances. There have been others, many others, since which have been changed to include those from Birth. There are options, but they do no good if the parent is unfamiliar with them. Every state has an Early Intervention program; check and see.
This is an interesting story demonstrating a point that many of us specializing in Autism have observed clinically . . . resolved/treated autism. I spoke about this recently;
#2 - Fri May 8, 2009 5:20 PM EDTmy son had a disorder associated with autism. It involved repeated behaviors, rocking, etc. he could not be put down on the ground, could not wear clothes, he screamed from the time he was born until he was 12 months old, he wouldn't eat or look at white foods, clothing etc. I quit work, i stayed home and held him on my lap for two years!!! If I took a shower so did he, if I went to bed so did he (i also breastfed him for 18 months) We never raised our voices, we kept a constant predictable routine--- I don't know how it happened but slowly by the time he was 32 months he was almost normal ( he still couldn't stand to hear singing ) He is now 6 years old and you would never know he started life like that. He reads at a third grade level (he just finished kindergarten) he plays sports and his teachers told me he is not only a leader in the classroom but exceptionally compassionate ( which made me the proudest) He just ran through the room he is a loud sometimes obnoxious normal little boy
My mom is a therapist and she thinks had we pushed him into a program he would have
forgive my spelling and lack of punctuation---i now have the newest member of the family on my lap and it is hard to nurse and type
This is an interesting story demonstrating a point that many of us specializing in Autism have observed clinically . . . resolved/treated autism. I spoke about this recently. From a pediatric neurological standpoint, I suspect that "recovery" has to do with the amazing plasticity of a child's brain. Take home messages . . . 1) Some children with Autism do not respond to aggressive conventional and/or complimentary medicine treatment 2) Most children have some residual symtoms from agressively treated Autism 3) Some children may recover completely. Andrew McIntosh, M.D.
#3 - Fri May 8, 2009 5:26 PM EDTThe kids don't recover from autism. They simply never had autism.
There are children with autism, and they do need help. Unfortunately, kids are now over-diagnosed with autism, and in fact school districts encourage it, as they wanted to qualify for federal funding ("No child left behind"). Autism has become a catch-all diagnosis for kids with other processing problems, such as speech delay. An autistic child won't recover, however a speech delayed child (for example) will simply catch up at some point during his or her primary education.
But of course, no one will admit to a misdiagnosis. That would imperil funding. No... the child recovered due to the special program. Yeah, that's got to be it!
#4 - Fri May 8, 2009 6:16 PM EDTIf recovery is being shown by use of MRIs, then the children had some form of ASD. Saying that children don't recover from autism is like saying people don't recover from cancer because some cancers are essentially always fatal. Suggesting that only dead people are the ones who had cancer is a trifle simplistic.
Just as there are many forms of cancer, there are varying forms of autism--and the study's authors are careful to note that the children who recovered had a milder form.
Please remember that school districts do not get funding for all forms of ASD. My daughter has Asperger's--there is no funding, there is no program, and Asperger's is not even called a disability by her school district. To be learning disabled, a child's academics must be severely affected--and she was at the top of her class. Not all insurance programs cover ASD--in fact, in Oklahoma, I am unaware of any which do. There isn't any funding to imperil--well, depending on one's state. We got no money for anything and the school refused to accomodate her at all--period.
I imagine that some children do recover--which lets us know that there is some trigger which might get turned "off" somehow. We need to study these children to find out what the trigger is and if it could get turned "off" or at least "down" on other children.
Even if it is the case that these children did not have autism, studying them helps us to determine why they were misdiagnosed and can help narrow the diagnosis. They are not assuming that this is a real phenomenon--first, they are proving it is real. I hope it is--but I am glad that they are being cautious about it.
Our granddaughter begin showing signs of autism at age 3, no eye contact, no longer talking, except in jibberish, fits, not wanting to be touched, etc. She was diagnosed and the dr. wanted to start her on all these meds. My daughter immediately took her to specialists and chose to try behavorial treatments instead of meds. She also took her to speech therapy. By the age of 5 something "switched on" and she began to show rapid improvement. At age 10 today she is perfectly normal and excels at everything she does. She also was diagnosed with juvenile diabetes at age 6 and gives her own insulin, changes her pump site, and tests her blood sugar 3-4 times a day. Did she have autism and recover from it? I don't know except she had all the signs and does not show any signs now. It was pretty scary!! I would not suggest to anyone their child did not have it after what we witnessed first hand and saw what happened.
Um...got some news for you. School districts don't necessarily want children with autism dx's. Why? It puts them on the hook for so much more in terms of services for that child, And the "what" that must be provided varies from state from state.
Lance - NCLB does not provide special education funding. In fact the ubiquitous tests that it promotes do not support special education goals nor do they even recognize that special education kids need help taking them. NCLB runs counter to all special education pedagogy philosophies.
Amen. I think any recovery is bull ticky as is auditory training, facilitated communication and the like. These persons likely were misdiagnosed.
It provides needless hope to affected families. Hyperbaric chambers anyone?
john- Hey, do they still execute retarded persons down there?
your attitude on the subject is already know. IMO, you have no actual knowlege of the subject, only bias and prejudice
I don't believe that kids necessarily recover from autism at least not completely. My 13 year old son was mildly autistic at the age of 3 and I will definitely say he has improved since we found out 10 years ago. To say that he has recovered completely, I cannot say that. He is now social in school and has friends, however his motor skills, although they have improved, are not age level. He doesn't have echolalia, but doesn't realize he's speaking loudly at times. My son is out of special education classes but he is still autistic. So I think there can be some breakthroughs, but complete recovery, I don't think that has been reached yet. Hopefully one day though, either way, I feel blessed to have my son.
This report confirms my experience with my beloved 5 y.o. son! At the age of 2 months, he was diagnosed with developmental delays and entered the Federal "Birth to 3" program. We worked tirelessly with physical/occupational therapists and special education teachers. By age 3, he was discharged and tested at a 4 y.o. level. I am convinced that the early intervention prevented Austism from developing; perhaps we were among the fortunate 10% where a cure is possible.
#5 - Fri May 8, 2009 6:21 PM EDTIt's always little boys, Amanda. My little boy too.
Read The Einstein Syndrome. Some very bright children (frequently little boys) have speech processing development problems that are misdiagnosed as autism. Granted, they should be a category of special needs children (the first years of a primary education in particular), but they are most certainly not autistic. And they tend to grow out of the problem later.
It's usually little boys--it's my little girl.
It's clear that your mind is completely made up--that is not very helpful for people who are interested in inquiry. If your mind is made up, why bother reading--you aren't reading to learn anything, and you aren't going to learn anything.
Being a gadfly is over-rated--there are lots of girls with ASD. Let's see if any of them have "recovered" before we start getting catty. Shall we?
Catty?
I think you have a reading comprehension problem, or perhaps an agenda.
For what it's worth, I'm glad you're little girl was correctly diagnosed, though you managed to misinterpret my point. Many children are misdiagnosed as being autistic. According to some (notably Dr. Stephen Camarata) SOME (not all, so please read carefully this time) of the children are in fact late talkers. Most (once again, not all) of the late talkers tend to be boys. And by the way, an MRI in a developing child with processing problems (late talking, "aspys", autistic, etc.) will change if the child in fact "grows out" of the problem.
I think the problem is that you introduce pseudo-science, as an MRI is not necessarily indicative of autism. You are using inductive reasoning.
One cannot be diagnosed with developmental delays at two months! The brain is undergoing rapid developement at this stage, and any developmental hallmark falls within typical ranges of months to years. If your child was diagnosed at two months, my suggestion would be to find another doctor.
It's certainly not "always little boys". Ever hear of Temple Grandin, the famous autistic agricultural scientist?
This sounds so much like my 5 yo son. I never felt he was truly autistic. I could have had him DX'd as autistic as recently as a year ago - late talker, poor eye contact, repititive phrasing, hand flapping and some peculiar fascinations (the trash can comes to mind). I never felt his were extreme though. His social skills were always good though. As he has gotten older, one by one these behaviors have dropped. They decided he has an auditory processing disorder (which I always believed to be the case). He went to Language Therapy and it has vastly improved. I am sure by the time he is 9, this will be a distant memory. He still flaps some though, but I believe that will drop. I do think they are very aggressive about DX'ing autism these days, esp w/ boys. I think normal boy behavior is now being put under a microscope. I am very grateful to our Lanugage Therapist. I do believe that my being home w/ him and taking a lot of time w/ him has helped. I think he would have really shut down in a group day care environment. I should add my son is also very bright - puts puzzles together pattern facedown and builds gadgets all the time. We never did intensive therapies, just language and occupation therapy in the last year. Each for 60 minutes a week.
#6 - Fri May 8, 2009 7:37 PM EDThi Julia -
I should add my son is also very bright - puts puzzles together pattern facedown and builds gadgets all the time.
this actually sounds more like asperger's syndrome than autism. language therapy can be highly productive. (I am an aspie, by the way). if this is the case, and I can only speculate from what you have said, he will need your help with social interactions as he matures - particularly during puberty. I have an article on my page called asperger's syndrome: an inward journey that will give a bit of insight into the world of an aspie as he grows and matures.
Doug
I have thought that on and off Doug and thank you. I appreciate your insight. It really helps me learn more anytime I hear from adults w/ "spectrum disorders" "The spectrum" is such a confusing world isn't it? My nephew (husband's sister's child - 1st cousin to my son - I mention this because of the genetics suspected in this disorder) has Aspergers. He is supposed to be more high functioning but he is and always has been much more socially affected than my son. He is actually afraid of my son even though he is 11 and my son is 5 (because he is an energetic, loud 5 yo). My son actually has several close friends and initiates play on his own w/ children he does not know. It's one of the reasons I and my sister in law have not felt Aspergers really quite fit my son. As always, I maintain a very close eye on him. Best wishes!
actually, Julia, some aspies are quite outgoing, some to the point of being gregarious.
Doug - I am reading some of your website information. Really fascinating - thanks! I need some more time to read through it. Until recently, I never would have regarded my older, 7 yo daughter as having spectrum symptoms but now I somewhat do. She has an intense dose of the non competitive, fairness thing as part of her personality. She was an excellent, early talker w/ no other real symptoms other than she randomly wrist rolls when excited (again, this has diminished each year). She has a top .005 % IQ but the tester was frustrated because he said she was anti social. She missed early, very easy questions and then answered ones almost no other child does, so her score could have been even higher. She too plays piano by ear. Her teacher refused to give her Citizen of the Month because she reads at 3 grade levels ahead but will not particpate in a reading computer point based competition (she regards it as "bragging" and hates the competitive aspect). The rare time she gets into trouble at school it is always, always over a fairness issue. Crazy, huh? She also did not walk until she was 19 mo old. I swear my kids should be in a study somewhere!
D DeMilo, very true. A few years ago my son would shy away from anything loud, covering his ears with his hands alot. Now he likes to get out there and mix it up with the other kids. He still covers his ears whenever he is scared, hurt or confused but he seems to be coming out of his shell. I wish there was an easy button cure for autism but as a parent, he is my son. I love him and autism is just a word.
there are no easy buttons but there are those that understand, our youngest son is autistic. I've sent you an invitation to the ausperger's group
Doug
Julia,
I am also an adult male with Asperger's Syndrome which is a very mild form of autism. A lot of these cures for "autism" usually tend to refer to students who might be diagnosed with high functioning or moderate autism but they are actually Asperger's Syndrome children. There is no cure for autism. I still do not believe that these children had the true diagnosis of "autism" to be qualified for a "cure" for this condition. At 40 years old, I still have problems socially and understanding cues but I have learned to adapt. I am an actual special education teacher who works with students now. If I hadn't learned to adapt to my limitations, I would never have been able to cope with my autism as well. I just wish more people were aware that they probably never really had true "autism" as known.
Does anyone really believe that the alarming numbers of "diagnosed" autistic children contain a significant number of "misdiagnosed children? I am not a parent of an autistic child and am extremely thankful that my son's twin girls appear to be developing "normally". My heart goes out to any parent and grandparent that has any of their loved ones with "development" problems of any nature. Let us all have hope for an answer for each and every one of these little ones. This appears to be a problem that has grown to epidemic proportions resulting in suffering for so many. There needs to be answers as to the causation of these problems regardless of whether they meet someones strict clinical criteris of autism or not. I am shocked and alarmed to see the petty bickering over verbage, pseudo-science allegations in some of the postings. The problem is real, we need to unite find the cause and fix it, whatever the cost, whatever the time.
#7 - Fri May 8, 2009 7:56 PM EDThi Bill. these two articles might help (or at least offer some in deapth information)
http://dougdemilo.newsvine.com/_news/2009/04/28/2742209-aspergers-syndrome-the-inward-journey
http://dougdemilo.newsvine.com/_news/2009/04/30/2758440-fragile-x-and-autism-spectrum-disorders
http://wordsperswade.newsvine.com/_news/2009/04/28/2745976-researchers-find-first-common-autism-gene
Doug
And what would you say, I wonder, about someone who once would have been very accurately described in your first article, but who has since given up on the human species for the most part?
In the main, I despise them. Strange, isn't it? I'll stop in the hall at work to catch an insect and put it outside, but regard the lion's share of my own species as worthless. Every other living thing on Earth has the sense to live as it was obviously meant to, given its attributes and abilities. Only humans seem confused on the point, and I am tired... so tired... of the endless sh*tty excuses people give, in an attempt to justify choices which even a moment's thought would reveal to be utterly incorrect.
That is, if they ever actually thought. I don't think most people are even capable of that, honestly... just mimicking what others do, pursuing various base biological satisfactions, and making a god of their own convenience. Afterwards, they engage in a truly herculean effort to rationalize all of this so they still can believe themselves to be "good". Hah.
Elistra, for what it's worth, I am the person described in the first article. a person can give up on humanity for the way they've been treated or percieved to have been treated, but by doing so they they are accepting the treatment to be justified and acceptable. or they can seek out those that are, shall we say, more enlightened.
other than that, I'm not quite sure what you are asking
I knew you were the person described. But you misunderstand me. It's not the result of ill-treatment -- I masquerade as a monkey to the other monkeys fairly well, and thus have very few social difficulties -- it's simply having given up hope on them.
I do not view them with a desire for revenge. I view them with an admixture of pity and weary contempt.
I viewed many that way for a very long time. if not for a traumatic experience witnessing abuses in a foreign country and the fight to stop it, I might still be in that place. I learned that there are those that will fight and die to end such things, even for children they don't know. there are good people left, just sometimes hard to find
My son was not diagnosed with Aspergers Syndrome until his 5th grade of school. We had suspected it from age 3 on. We had a second and third opinion to confirm this diagnosis. He is high functioning and I believe this had something to do with his improvement as he has gotten older. I can tell you that my son is currently in honors classes in high school in ninth grade and considering taking extra classes to graduate a year ahead. One reason he is considering this is because many children in his grade do not value their education and impede the instruction he receives in the classroom. He actually is more responsible and mature than most and although he does stay stuck on his areas of interest, science and math, he does get sarcasm and humor. It hasn't been without alot of coping skills learning that his father and I have instilled and pushed in him since he was born. Not to mention, regardless of anything he has, that life is NOT handed to you and you MUST work for anything you want in life. That doesn't have to be screamed into you, some of this is good ole' common sense training from older generations that so many parents nowadays dismiss for some new professional jargon out of a book. I feel from observing children in early child care that depending on the functioning of the child it is possible for the symptoms to fade if the child is identified early and the family is supportive but not enabling. I am very proud of my son and thankful he has adapted and feel he will succeed in providing the community an individual who will further our knowledge in science and math. Who knows - he very well could be the next Albert Einstein or Stephen Hawkin.
#8 - Fri May 8, 2009 8:09 PM EDTBill - I think in many non severe, mild cases my response is very unpopular. Sometimes, with very, very small children you have to wait and see what happens. Back in the olden days, my son would have barely caused a blip on the radar of most preschools. Then again, most kids in the "olden days" weren't even in preschool. Kindergarten was half day. Now adays, there is so much pressure on early intervention, which is great for kids w/ more serious DX's, but I think it is filtering down and making people w/ very young kids who are just a little quirkly way too paranoid. So, no causation or fix needs to be found. Sometimes, just giving kids a chance to mature is the answer. These kids have always been around.
#9 - Fri May 8, 2009 8:25 PM EDTJulia. I have to disagree. over the past 10 years (using the same testing criteria and same age groups) verified cases of autism spectrum disorder have increased dramaticly. you can find this information through world health org or the american med assoc
I see both sides of the coin. I also think many parents are so much more aware now kwim? Things that wouldn't have set off alarm bells 50 years ago (flapping, rocking etc...) now do. I think several generations ago, parents were more understanding and accepting of a bigger variety/variances in what was considered "normal childhood behavior". Now adays, everyone is so isolated from each other (suburbs phenom) that they don't have a real pulse on "acceptable or not acceptable". So, I think more people take their children in for evaluations. I do agree that things in our diet esp preservatives etc... are taking a toll on ALL of our bodies! Yikes! I can definitely see that contributing to increased #'s. I believe that all "spectrum" disorders probably have individual triggers - for some kids it may be vacs, others preservatives, lack of vitamins, certain stressful familial/ day care situations you name it. I think there definitely is some sort of trigger combined w/ genetics. I am just unsure that really hitting a panic button at a very young age for children w/ milder symptoms is super helpful. I think my son would have actually been totally miserable if I had put him in super intense therapies. Every child is different.
Julia. there is one test available that can verify or rule out a genetic link. the genetic anomoly is called fragile X syndrome (I also have information on it on my page). I'm sending you an invitation to the asperger's group
Doug
I do videos on youtube showing my sons recovery. look up Philcommander2 on youtube...or type in "Face of recovery" on the search bar on youtube.
#10 - Fri May 8, 2009 8:28 PM EDTPhilCommander, i believe this is your link. http://www.youtube.com/watch?v=_Kb9GWOigOM
By the way, good video. Reminds me of my 6 year old son.
Wow. My son was diagnosed with autism at age 3-4. My profession causes me to question and second guess medical diagnosis' I receive from most doctors because I've seen a lot of misdiagnosis over the last 20 years. I hold doctors to a very high standard and I make it known from the beginning. I question. I research. I might even argue the point. I had two children before my son so I recognized that my son was different but I was in denial over the autism diagnosis. I refused to believe it. I didn't want to believe it. However, the more I researched, over years, the more I realized that it was accurate. It didn't come easy. I couldn't let my son down. I would just have to work harder. I don't believe in medicating children unless every other option is ruled out first so I did not medicate him with any drugs designed to affect his brain chemistry. This is also because of things I've see in my work. A mother's work is never easy and I just set out determined that I would prove them wrong and "teach" my son to be better. Yeah right. I was all over him every minute that he was awake, very much different from the rearing of my first two children. I was unrelenting. I agressively corrected everything immediately whether it be behavior, speech, outbursts, unrealistic fears, clothing issues, no eye contact or rolling eyes, repetative behavor especially walking in circles, handwriting, whatever. I previously picked my battles with my older children, but there were no battles to pick with this child, it was one constant battle. The only choice I had was to do everything I could or fail my child. I constantly told him how much I loved him, I explained things, we experienced it all, even losing my patience at times and getting mad at him. Things were always intense and extreme but I always communicated my every thought with him with regard to his condition. I try not to shield him because I am teaching him how to live among his peers. I worried that he just might be learning how to react to me but not truly understanding. A couple of years ago, he began to connect and I realized that he was FEELING the connection and starting to make friends. He is 12 now. He still has trouble in his relationships, saying hurtful or insensitive things, but now it bothers him when someone responds negatively. We talk about it and he is able to reason and realize why they were offended. He will seek them out and apologize and tell them why. He is very involved in his diagnosis and his treatment which remains to be unmedicated and having to work a little harder at life. After my experiences, I believe in this study. I think it's silly to think it can't happen. Every ailment has the potential to have a cure at some point in time.
#11 - Fri May 8, 2009 10:16 PM EDTYou do not RECOVER from Autism, you COPE with Autism!
#12 - Fri May 8, 2009 10:28 PM EDTand your basis for your statement is? I ask this only because speak with such conviction
#13 - Fri May 8, 2009 10:33 PM EDTI had two older children before my son and it was obvious that he was different. He was diagnosed between age 3-4 as high functioning autistic with PPD. He had many issues including no eye contact, repetitive behavors, violent outbursts, unrealistic fears, issues with clothing, waking throughout the night, etc., etc., etc . I refused to believe it and set out to disprove it. I refused to medicate my son despite his physician's push to do so. I just had to work harder and that's what I did. I was all over my son every minute he was awake correcting every behavior in an effort to "teach" him. Yeah right. It was intensive and unrelenting. I constantly told him how much I loved him and talked to him but he didn't respond to affection. I never let up. This was our life from now on if I wanted him to be a functioning adult. The prognosis had been very unsettling. After years of research, I finally realized that the diagnosis was correct. I started to fear that he was just learning how to give me what I wanted from him but not connecting. The empty eyes were devastating. A few years ago I discovered a break through moment. My son finally began to understand and make a connection. He started to give back. Today, he is involved in his diagnosis and his treatments which remain unmedicated. He returns my affection and expresses his love to me and his older siblings. He now has friendships. He continues to struggle with saying the right things, and doesn't immediately comprehend why his friends react negatively with some of the things he says. However, he is able to discuss them, reason, and figure it out. He will then seek that person out and apologize and tell them why he felt that he offended them. He is 12 now and I am amazed when I think about where he was, the prognosis, and his success despite the odds.
I was always a skeptic. Not anymore. With what we have lived through, I can't just ignore this study. I am a believer. Every ailment has the possibility of a cure in time.
#14 - Fri May 8, 2009 11:00 PM EDTI too have 2 older kids, 29 and 30 doing just fine. Six grandkids too, all fine. I am 49 now and have a 6 year old autistic son. I know that behind my back that there are some say that it is because of my age. All kinds of theories out there. Anyway, i wish you the best and you are not alone.
Sorry for the almost identical second posting. I thought I lost the first one and then they apparently both posted at the same time.
#15 - Fri May 8, 2009 11:16 PM EDThi ALeta. for some, there is a cure, for others, there isn't we are each of us different but regardless, there is always hope for a better tomorrow. I am glad you have had the success you have had with your son and he will likely continue to improve. ours was low functioning with severe anger management issues and on heavy meds and is now high functioning without meds and little anger issues. the key, as you have already learned , is the amount of attention we give them "training" their minds (for lack of a better term) to connect with others
#16 - Fri May 8, 2009 11:21 PM EDTOh, I have come to realize just how significant and devastating autism is on so many levels. Whatever it takes to help them is reasonable and acceptable. There's no one size fits all. I made a choice that felt right for us based on my life experiences and the information - or lack thereof- that I had at the time. It sounds like you have also had tremendous success from where you began and I'm very happy for you. I do believe that the medical profession will find the link(s) at some point and be able to evolve from there. That's what gets me through it.
I really feel that there's some environmental link, or trigger, or aggravating factor, because for us personally, my son was much worse when he seemed to be suffering from his allergies.
D DeMilo, When my son comes up to me and rambles, i can see in his facial expression that he is trying hard to communicate. It breaks my heart that sometimes, i just don't know what he wants. I don't know about you but that really tears me up the most.
Aleta, there are some articles on my page that might help and you're always welcome to contact me
Thunder, I know it does. part of the communication problem is he's thinking faster than he can talk and it causes a conflict. get him (if you can) to slow down and compose his thoughts completely before trying to verbalize them. as simplistic as this may sound, it can be very effective
Where would I find your page?
just click on my name on the top left corner of this comment
:)
Your page has a lot of articles that I have researched including autoimmune disorders. I plan to revisit it to take a closer look. Thanks for the info.
This study is a fraud!
#17 - Sat May 9, 2009 12:05 AM EDTand you base this on what?
#18 - Sat May 9, 2009 12:14 AM EDTabout the researcher;
Fein's research has spanned many areas of autism over the last 30 years: she has worked on language, brainstem functioning, cognitive profiles, different aspect of memory, and social functioning. She is presently working on several projects with colleagues in the psychology department. The largest deals with early detection of autism. They are also working on projects that involve early language development in children who were just diagnosed with autism and who have started treatment. At the other end of the spectrum, is a study involving children who, Fein says, are essentially recovered from their autism, to see if there are residual language deficits. She is working on a book on autism geared for elementary school teachers and also has a private practice doing neuropsychological evaluations of autistic children.
Her research appears to be valid, following established criterial methodology. Unless you have credentials to refute this research, I'm going to assume you are speaking out of bias
#19 - Sat May 9, 2009 12:25 AM EDTI had to take my son out of his elementary school. He now attends a special needs school with people that are well trained (thank god) Kudos to you folks that look after our kids.
if not us, then who? we're all in this together
Yes my friend, i hope we all are.
My son Dakota, now 12, was originally dx as autistic when he was 3. A later re-diagnosis of high-functioning autism. Finally, a dx of Asperger's when he was 10. Will he continue to the point of being considered a neurotypical? I can hope so, but I honestly feel that he will probably always have some of the signs. I recently discovered at 49 that I myself am an Aspie.
When my son was first dx, he had all the signs and symptoms of regressive autism. Lost all speech, no more eye contact, couldn't stand to be touched, began smearing feces, etc. and we were devastated by the drs hopeless view that he would end up in either an institution or at best a group home.
He spent 3 yrs in special preschool, then k - 3rd mainstreamed with continued OT, PT and speech. In 3rd grade he surprised many by getting pass/advanced on all of his SOL tests and a perfect 600 on one. Funny now, the school psych tested him before he started k and said he was borderline retarded as well as autistic.
He talks now, ALOT! but often it is in little professor mode, but we were told he would most probably never speak again. Some of these kids really did have a dx of classic autism and now longer meet the criteria.
My youngest daughter had all the signs, we were able to recognize the signs earlier because of Dakota's dx. She went through an evaluation that found her functional level at 15 months was that of a 7 month old. No speech, no babbling, no eye contact and aversion to physical contact.
A team of specialists in Virginia's Infant Intervention Program worked with her and although the program is for birth to 3 years, by the time she was 19 months she had caught up, and then surpassed the goals that were set. Her speech began suddenly - she counted to 17 one night out of the blue while putting puzzle pcs into a basket, then counted them again as she took them out!
By 4 yrs she had somehow learned to read on her own and today she is considered totally recovered. She'll be 9 this month and is a straight A student with many friends. The only residual signs are her desire to organize and catagorize. At four she surprised us one day when somehow the conversation in the room turned to possums and their feet, "Actually, possums have opposable thumbs."
I don't care what anyone says about kids that have recovered not ever having autism to begin with, I know differently. I've been to hell and back twice.
As far as schools wanting a dx of autism, our son's school did not want the dx of autism for his IEP and said he would qualify for more services if we went with OHI instead. I have no idea why.
Parents, grandparents, even if your child is not able to communicate with you, they are still listening, learning, they are still there, inside. Let them know that you know that.
#20 - Sat May 9, 2009 12:36 AM EDTOf course some kids are going to improve or even be cured. This is the nature of the human body - just because we name a condition or disease doesn't mean that that condition or disease will express itself uniformly in every person. Nature is diverse and does not always function predictably to the labels we apply to it. Someday they may discover that autism is actually two, three, four or more conditions. My son is autistic and has improved dramatically from the years of ABA therapy that we tailored to his needs. The brains of all people can be trained. Be aware of the wackier therapies - if it seems silly or is not directly related to behavior it will probably not help your child
#21 - Sat May 9, 2009 3:07 AM EDThi Trish. actually, spectrum disorders cover a very wide range of anomolies ranging from profound autism through mild asperger's syndrome and the causal functionalities are just as diverse. each case has to be addressed individually. there are no easy answers, no magic pills, no panaceas - only hope and determination
By the way - schools do NOT want to diagnose children with learning disabilities. By and large children with learning disabilities cost schools four or five times more to educate than neuro-typical children. The "government" does not reimburse the schools by the number of children diagnosed. This is why so many parents have to hire lawyers to get even the most basic and sometimes ineffective services for their kids. I don't know where the myth got started that the government gives schools more money when students are diagnosed - but it sure wasn't started by the parent of a kid with learning disabilities.
#22 - Sat May 9, 2009 3:40 AM EDTsad, but true. I have one friend (a viner) going through this now
Schools do not want to have to deal with special need kids. They are already too deep into the red to try and found more money and teachers. Meanwhile, the mainstream and talented kids all got left behind. No child left behind means everybody stay behind.
good morning Keith. I haven read your book yet (but I will)but it's not that simple. spectrum disorders are not emmotional oor psychoreactive in nature, they are caused by an anomally in the development of certain synapses in the brain, usually during early development. in some cases (thought to be as high as 18%) these spectrum disorders are genetic in nature caused by a condition called Fragile X syndrome.
having said that, you are welcome to refference parts of your book here but linking to your sales site is a violation of the user agreement
#24 - Sat May 9, 2009 8:41 AM EDTi'm sure there are plenty of kids who really have autism and that some can recover from it. however, after watching what's happened with friends of ours and dealing with the early intervention system for something else, i am convinced that there are tons of misdiagnoses of autism. i think that is a big story. from the perspective of parents whose children actually have autism, it also can't be great to have children lumped in with theirs who are not truly autistic. i think most people would be amazed to find out how even the smallest idiosyncracies (ie using one's middle finger to point instead of the pointer finger), are targeted by medical staff as symptoms of some mystery ailment that NEED to be explained by some diagnosis. when they can't find anything other diagnosis, a lot seem to want to throw that child into the autism category.
#25 - Sat May 9, 2009 9:32 AM EDTI feel so bad for people who can't get services. My biggest suggestion on that is to test before they are in Kindergarten. Usually, the threshhold to receive services is lower in the early steps, pre K state services than the elementary school standards. My son always qualifies because of his auditory processing disorder. He has trouble answering wh questions so he scores lower than he actually is. They were very surprised when they gave him non language based testing.
#26 - Sat May 9, 2009 9:40 AM EDTYou're in Easy Mode. If you prefer, you can use XHTML Mode instead. |
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