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Old 03-21-2013, 07:50 AM   #21
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I don't know how many groups make the claim that ABA will cure autism now but it was bandied about a good deal around the time Kearnan was originally diagnosed. It was one of a few newer therapies to hit the scene at that time that were supposed to cure ASD children. It seems Kearnan was diagnosed right at the beginning of the surge of understanding of autism and diagnosis. As I mentioned in my last post Estimates jumped from 1 in 200 to 1 in 100 children in maybe 2 years from his diagnosis and I hate to be cynical but it seemed like everyone was eager to cash in on parents who just wanted to "fix" their children. When you first hear your child is autistic it is like your world falls apart (or maybe that was just how it was for me). Even though you have been dealing with the behaviors for years maybe having the label is world altering. Now you have people on all sides telling you if you just do this, give your child this supplement or feed them this diet they will suddenly be well and it is hard to sort it all out. Kearnan was diagnosed right at the height of the DAN! movement, when ABA was just getting popular, Floortime, Play Therapy, Movement Therapy, Music Therapy, Horse Back Riding had just sort of hit the scene, Oxygen therapy, Chiropractic treatments, GFCF diets, GAPs diet, Leaky Gut, plus traditional therapy, none of it was covered by most insurance companies and you felt like a horrible parent if you didn't do it all.
I totally relate to this. For years DS's behaviors were suspected as ASD and that was fine, we dealt with that. Then a professional tells you your suspicions are right and it hits you like a Mack truck. Why is that?

I wanted to add that because of the nature of ASDs (not affecting any two children exactly the same way), I find it hard to believe that any one therapy can be a cure all. What works for one may be detrimental to another, that's how differently kids on the spectrum can be. Unless the differences are actually different disorders that haven't yet been diagnosed and differentiated from autism related.

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Old 03-21-2013, 08:39 AM   #22
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I'm curious, what is your opinion on Jenny McCarthys story? ER testimony is that her son profoundly regressed and became autistic after receiving a specific vaccine as a young toddler and that through intensive therapy (biomedical I believe), he was 'recovered'. I do not know if she considers him still autistic or not, just that he 'recovered'.

I know there are many who claim this to be true for their children, I only used Jenny as the example since her story is known to many.
I do not necessarily think that vaccines cause autism, but I think that in certain children whose immune systems are not strong enough to fight them at the time can trigger it.
My son was above the curve developmentally until the day he received his mmr shot. He had asthma, numerous allergies, ear infection after ear infection, etc. The day he received his shot, he had an extremely high fever. After that he has never been the same. He lost all speech. Up until then ( he was one) he was saying teletubbies, bellybutton, etc. After, until after age three he could only say mama, wa wa, and later choo choo. He began banging his head, turning in circles, staring into space, lined everything up, and so, so many other things.
The way that the neurologist explained it is that he always carried the autism gene( or whatever you want ti call it), but that it was likely that fever CAUSED by the shot, set something in motion. But if your child does not already carry the gene, the shot would not " cause" them to become autistic.
Even with all of the controversy around the shot, and drs not legally being able to tell you that the shot can cause autism, it has been recommended to me by two peds, a neurologist, and a neuro physcologist to wait until ds 2 goes to school for him to receive the mmr. To me that says something.
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Old 03-21-2013, 01:13 PM   #23
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Re: Autism and "cure" for it... ABA treatment/CARD

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I do not necessarily think that vaccines cause autism, but I think that in certain children whose immune systems are not strong enough to fight them at the time can trigger it.
My son was above the curve developmentally until the day he received his mmr shot. He had asthma, numerous allergies, ear infection after ear infection, etc. The day he received his shot, he had an extremely high fever. After that he has never been the same. He lost all speech. Up until then ( he was one) he was saying teletubbies, bellybutton, etc. After, until after age three he could only say mama, wa wa, and later choo choo. He began banging his head, turning in circles, staring into space, lined everything up, and so, so many other things.
The way that the neurologist explained it is that he always carried the autism gene( or whatever you want ti call it), but that it was likely that fever CAUSED by the shot, set something in motion. But if your child does not already carry the gene, the shot would not " cause" them to become autistic.
Even with all of the controversy around the shot, and drs not legally being able to tell you that the shot can cause autism, it has been recommended to me by two peds, a neurologist, and a neuro physcologist to wait until ds 2 goes to school for him to receive the mmr. To me that says something.

I wanted to address this as well and got lost in the whole ABA cure thing. Kearnan's situation is a little different as he has factors all over the map. I am SPD, Bipolar and have GAD and social anxiety. He probably had SPD from birth and certainly had GERD and FTT so some of this he was always going to have, it was just dealt to him in the genetic cards so to speak. If I let a doctor diagnose me honestly I don't even want to guess what they would come up with (I had to train myself to do most of the social things people do naturally) OCD is in there but may or may not be associated with my mania and anxiety, ODD has been added and taken away, and recently the boys' developmental specialist looked at me and said "so you're Aspie right?"

All that to say it is hard to tell where he would have fallen on this spectrum if nothing would have ever happened to him. However at 18 months he was developmentally advanced. I do believe I have posted his story around the forum before so I will try to be brief (partially because I don't want to write a novel and partially because years later it still hurts to think about). He spoke in short but complete sentences "I want to go to the zoo" "I like the green cup" "I sit in your lap" ect. He made appropriate eye contact (which is a big deal) and was a very outgoing little boy who just generally loved people. He was finally getting over his GERD and starting to enjoy a varied diet (while still nursing regularly). His pedi commented at his 18month appt that we should consider a preschool for gifted children to help him continue to make advancements as he was so bright. At that very same appt he had the MMR shot. Everything changed from there. He stopped talking, stopped making eye contact, stopped sleeping, and slowly stopped eating. All he did all day every day was scream. This went on for roughly a year, maybe more. It wasn't a normal cry either, it was horrible. Testing (ABR, EEG and MRI) left us with a diagnosis of encephalitic brain damage. The neurologist told us that the MMR caused his brain to swell (the screaming was caused by the pain ). Eventually he was given a further diagnosis of PDD NOS, low functioning, to cover the symptoms he was exhibiting. He still couldn't speak, he couldn't interact normally, he had taken to biting people, and he still wasn't eating. Eventually we did turn to alternative treatments on top of more traditional therapy. With b12 injections he regained speech but I do not believe it would work for every child, it worked for him because of his specific diagnosis. His diagnosis has continued to change over time as his brain has grown and developed he has been able to make up for the damage and even heal it. I do not know if he would be ASD without the vaccine, probably not. In our situation we were advised never to give him another MMR or even Varicella vaccine and probably not give Tharen one either. So that is my take on the situation coming from what happened to my child.
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Old 03-21-2013, 06:39 PM   #24
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Re: Autism and "cure" for it... ABA treatment/CARD

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I do not necessarily think that vaccines cause autism, but I think that in certain children whose immune systems are not strong enough to fight them at the time can trigger it.
I agree with this. And Shannon, I appreciate you sharing your story. That is so heartbreaking, especially the part about him crying in pain.

I want to share that I 100% believe that our pediatrician prevented autism with both of my children. For whatever genetic reason DH and I do not produce the healthiest kids. Doctors suggested genetic testing but we decided not to have anymore bio kids so there's really no reason. DH and I are both healthy aside from some allergy/asthma issues but our kids both have some larger problems. DS1 has a birth defect related to his GI tract and very likely has ADHD. DS2 had torticollis, leaky gut, food and environmental allergies, very poor vision with amblyopia.

I chose our pedi specifically because she specializes in treating kids with autism. We started seeing her when DS1 was 15 months. He had been vaccinated up through that point with his old pedi but I had an uneasy feeling about the MMR so I refused it. At our first appointment with our current doctor she said no vaccines until he's healthy and he was far from healthy at that time. It took YEARS to correct the damage that was done from his NICU stay and surgery when he was a newborn. Despite the ADHD symptoms and unavoidable issues related to the disease he's very healthy. He recently had the MMR at age 5 and while we did notice several reactions it was nothing detrimental. We will wait until DS2 is at least 5 before giving him the MMR.

DS2 saw our pedi from birth and she helped us get through the torticollis without a helmet- she felt the helmet could lead to sensory issues. We didn't vaccinate until he was 6 months old and then it was very spaced out and selective. His weight was dropping and dropping without a real explanation for it. He was delayed in walking and had speech issues. From 12 months to 2 years he was taking major steps backwards- we did not vaccinate the entire time. At 2 years he was diagnosed with food allergies, a leaky gut, and he was stuttering. He had been sick nearly his whole life and we were unaware of the vision issues at that time. He had dark circles around his eyes and he was so, so skinny. We followed a 3 month protocol to heal the leaky gut and it worked. He came out of his shell and turned into a brand new kiddo. Friends and neighbors commented on how he'd changed. Many of them hadn't even really heard him talk. He had the Dtap vaccine at his 3 year well visit and he tolerated it very well. He won't have another vaccine for 3 to 6 months but provided he's healthy he will continue to be vaccinated at a very slow pace.

I hear about kids with chronic ear infections and round after round of antibiotics that are running fever and they walk out of the "well visit" having been given 3 shots. IMO it just seems crazy to vaccinate a child that isn't fully healthy.

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Old 03-24-2013, 03:20 PM   #25
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Re: Autism and "cure" for it... ABA treatment/CARD

This was an interesting thread to read because I used to work as an ABA therapist for CARD!

Like many others have said, I don't think ABA is a "cure" for autism...but with at least one of the kids I worked with, after several years of ABA therapy, he no longer met the criteria for an autism diagnosis when he was re-evaluated. I think out of all the treatments out there, ABA is the most promising for many kids with autism.
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Old 03-24-2013, 03:52 PM   #26
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Re: Autism and "cure" for it... ABA treatment/CARD

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I'm a bit over ABA being called a cure. I have had my kids in ABA therapy for 3 years and I've never heard anyone refer to it as a cure. There is not a single ABA therapist that I know that would call it a cure, most of them don't believe autism can be cured.

For what it's worth, I don't think autism is "curable" in the way most people consider the word. My goal with ABA is for my kids to learn how to do some things that are innate in "typical"people, but they have to be specifically taught in order to function to their best ability in society. We've had huge success with ABA (lowered aggression, potty training, play skills) but my children are very clearly still autistic.
I agree. I have never heard anyone say that ABA is a "cure" and I am very involved in the local Autism community.

Personally we are big believers in the effectiveness of ABA therapy. It has been proven time and time again in scientific studies to be effective in teaching all sorts of skills to kids with autism - educational, social, communicative, adaptive behavior, etc. When my DD was diagnosed with high functioning ASD (some would say Asperger's) we started a robust ABA program. Between home and school we did 35 hours of ABA each week. And I say 'we' because I participated in all the home ABA. I observed and contributed so that I could be a part of it all and encourage the same goals outside of therapy. After about 15 months my DD had made so many gains that we were able to start scaling back her ABA therapy. This year only 2 years after she was diagnosed she is now doing just 3 hours of ABA each week in addition to some OT and ST and special help from her special ed teacher at school.

I wouldn't call her cured in any way. She has worked so hard to gain a whole lot of new skills, but her brain still works differently. I think it always will. I do think that we were able to teach better communication skills while her brain was still developing so in some way I guess some of the severe communication issues have been 'cured' but really I think we just worked so hard to retrain her brain at a very young age. But she'll need extra help for a long time to continue to hone those communication skills and social situations are going to be an issue for us to work on for a long time.

ETA: Big hugs to all you mamas who had kiddos that regressed. My DD has been her own unique self since birth and I imagine that Autism must seem especially cruel when it changes your child and robs them of skills they had previously.
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Old 03-24-2013, 03:57 PM   #27
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Re: Autism and "cure" for it... ABA treatment/CARD

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Thanks, just a few more questions:

What are PDD NOS?
Why do autistic kids need physical therapy? I know why they need OT and ST.
My DD needed PT because she has a lot of motor planning issues. Her PT and OT goals overlapped a little but we found some things were best addressed by a PT. Specifically her challenges were alternating feet on stairs, throwing a ball, catching a ball, jumping with two feet, and climbing. It wasn't so much a strength issue as that she didn't understand how to make her body do those actions. She could watch someone demonstrate but she couldn't mimic our motions.
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Old 03-25-2013, 08:17 AM   #28
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Re: Autism and "cure" for it... ABA treatment/CARD

Thank you so much for the responses. I am forming a clearer picture of ABA. I'm glad none of you think of it as a cure.

lindsaydud - What is the "cut off" point for trying ABA on someone with Autism? I mean, some of the kids I've heard of on the spectrum do not respond at all to other people etc. Do you have an evaluation before accepting someone for therapy? Is it only for high functioning people?

If I step on toes or make a faux pas in my questions, kindly point it out. I am ignorant on the subject and might say stuff that is offensive etc. because of it.
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Old 03-25-2013, 09:10 AM   #29
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Re: Autism and "cure" for it... ABA treatment/CARD

DD2 is on the spectrum and has been doing ABA since she was 2, unfortunately not as often as we would like as we live rural so once weekly sessions, though because I attend them they have taught me how to apply things into our daily life. Right now she is even helping train support workers! I'm not sure about an age cut off for trying ABA.

ABA is definitely not a cure in our case (I'm of the belief that DD2's brain is the way it is, and while she is learning to adapt to the NT world, she will never be "cured" as such and in my family there is a genetic basis for autism) but has helped her so so much.

Most people would never guess at her diagnosis, she comes off as quirky and a bit odd, and since she is very petite most people don't realize she is older than she looks so her behaviours may be seen as normal for the age they think she is.
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Old 03-25-2013, 09:30 AM   #30
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Re: Autism and "cure" for it... ABA treatment/CARD

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Thank you so much for the responses. I am forming a clearer picture of ABA. I'm glad none of you think of it as a cure.

lindsaydud - What is the "cut off" point for trying ABA on someone with Autism? I mean, some of the kids I've heard of on the spectrum do not respond at all to other people etc. Do you have an evaluation before accepting someone for therapy? Is it only for high functioning people?

If I step on toes or make a faux pas in my questions, kindly point it out. I am ignorant on the subject and might say stuff that is offensive etc. because of it.
I'm not linsaydud, but I wanted to chime in and say that I don't think there is ever a cut off point for ABA. Personally I use ABA methods on myself and my husband and our 2 year old (all neurotypical).

At a really general level, ABA is a positive behavior modification method. It is about finding something that is rewarding and encouraging to an individual and then setting that "reward" up as a goal for positive behavior. The reinforcer could be verbal praise, tickles, time with a special toy, candy, whatever is meaningful to that person. If I say to myself, "okay, as soon as I finish unloading the dishwasher I can sit down and check my email" that is using ABA principals on myself. In ABA we ignore 'bad' behaviors and encourage and reward good behaviors. Lots of people use that kind of positive parenting and know how effective it can be!

What makes good therapeutic ABA and gets the best results is a critically trained implementer and certified analyst supervisor who are taking lots of data on the specific goals and methods and results. When good data is taken it is easy to see if something is working or not. Our BCBA (board certified behavior analyst) has helped me a lot to see how setting up a situation differently can encourage the behavior or communication we want. Once my DD demonstrates an ability to complete a task we start working on the task in varied situations and environments to generalize that skill. Again, we take lots of data to make sure the skill is properly generalized before we cross it off the list as "mastered".

Does that make sense?
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