Introduction

[Ian Wilson]

Hello everyone,
I am a Regional Supervisor for an ABA vendor in Sacramento, California. We work with the youngest of kids (2-6 year olds on average). I am here because I would like to discover what I can about what is and what isn't working over the long term. Most of the families I work with are still in the beginning phases of dealing with Spectrum Disorder issues, so I am curious about the perspective of people who have been living with it for several years.

Thanks,
Ian

[JoshP]

Welcome to the site Ian! Hopefully you'll be able to learn a few things as well as a contribute while you are here!

[Julie]

[QUOTE=Ian Wilson]Hello everyone,
I am a Regional Supervisor for an ABA vendor in Sacramento, California. We work with the youngest of kids (2-6 year olds on average). I am here because I would like to discover what I can about what is and what isn't working over the long term. Most of the families I work with are still in the beginning phases of dealing with Spectrum Disorder issues, so I am curious about the perspective of people who have been living with it for several years.

Thanks,
Ian[/QUOTE]

Greetings Ian,

I am autistic and have been since birth (is there any other way, right?). It is genetic in my family and it is a neurological disorder.

I was subjected to ABA for a few months, but was pulled out after my parents saw that it wasn't doing me any good other than traumatising me and making the situation worse. They realized that the "behaviours" were not behaviourally caused, but were worse when I was uncomfortable, in pain or in a state of physical emergency (which for most of us is all the time).

ABA seems to be directed more at behaviour modification than its original premise of discovering what is causing the behaviours and removing them. I.e.: I have terrible digestive problems and am always in pain with cramps or just nauseous. I find this to be physically distressing, and my so-called behaviours get worse when I'm feeling ill or in pain. I also get severe headaches which cause me to withdraw and start stimming.

Simply modifying behaviour works because it works with anyone or any animal (that's how one trains a dog or any other animal). Punish or bribe someone enough and they'll do what you want them to...particularly if they feel threatened or are in a state of emergency. They want you to stop, so they will behave as you want them to in order to stop. This is not learning, nor is it therapeutic, in my opinion. Sure it works. Sure it eliminates the behaviours. But it does more damage in the long run than it does in the short run.

In 1999, I finally broke down. I had a meltdown so bad that it almost killed me. I could not eat, drink or do much of anything for three months. I dropped 60 pounds in that three months and almost starved to death. When I finally accepted that I was autistic and that my behaviours are signals that something within my body is wrong (i.e: state of distress or my stomach problems are getting worse), I was able to help myself recover.

I was finally diagnosed with acid reflux disorder and irritable bowel syndrome that year because of all of this. None of the doctors knew I was autistic because I "behaved" normal enough to them. This helped me get properly diagnosed with the same digestive problems that had been bothering me since I was born.

My esophagus was almost burned through after 23 years of living with reflux disorder and being told that my problem was all in my head and that I was just being manipulative and behaving badly when I wouldn't eat acidic foods, etc. Had I not been properly diagnosed and put on a medication that helps reduce the acid, I might have gotten worse.

I was hiding my autism before, but now I do not need to because the behaviours are kept at bay on their own because I have taken charge of my physical discomfort and have learned to relax on my own. I also have supportive friends who know I am autistic and don't expect me to behave any differently. They know that my autistic behaviours, when they get bad, are due to overload, stress or physical discomfort and they help me through it.

If therapists would help autistic people through their discomfort rather than blowing it off as "behavioural", I think they'd find they are more successful...and I think they'd find that the success lasts long into adulthood.

Support rather than oppression of the condition and teaching how to ease one's own discomfort in the early years is what autistic children need. They do not need autism stamped out or eliminated. It's neurological, so unless you can change a person's nervous system, you can't cure it anyway. You can help, you can support, you can assist in making life easier for autistic people and then teach them the skills they need to grow into adulthood.

You can teach a person anything when they are at ease and receptive. When anyone, even you, is in distress, they cannot learn anything. Same goes for autistic people.

Try teaching a person something about social skills when they are being chased by a bear or an axe murderer, and you'll get nowehere because his body and mind are in a state of distress. Autistic people are in this state of dostress and overload most of the time, the endorphins and adrenaline are racing through their body so that they are almost high on it...how can they learn in that state? When you restrain or force them into behaving a certain way when they are in distress only distresses them more. Eventually, they'll behave as you want them to, but it will come back to bite them in the butt when they are older...It happened to me and it happens to a lot of other folks.

But...speaking as an adult autistic who went through ABA (even for just 3 months!), who still has nightmares about it and ended up having to teach myself the relaxation techniques and proper foods to eat to keep my digestive troubles at bay, I do not believe ABA helped me at all. Sure, I acted normal, but my condition will always be here. I will always be autistic, but I have learned the hard way that when I relieve the discomfort of my headaches and stomach trouble, I can "behave" as a normal person without the behaviour modification. The behaviours go away on their own when I'm comfortable, calm and not in a state of distress.

I'm sure many ABA therapists would find this to be the case with their own clients if they'd only look at what causes the behaviour instead of seeking to eliminate it through simple modification.

I do not say this to slam you or ABA, but you did ask how it affects people in the long run and that is how it has affected me. I hope this was of some help to your query.

Julie

[AutMom]

Julie, I read your post with great interest...it makes a lot of sense to me. My son also has acid reflux. I find that his physical comfort and health is so important!

Welcome to the group!:)

[Maresa]

Julie,

Thanks for your insight. I am a student studying Psychology and have a 6 year old daughter diagnosed with Autism and Epilepsy. She is high functioning, and verbal, very intelligent but has trememndous problems with sensory overload, anxiety and communication issues. I appreciate your view on what it is like for you as one who has Autism.

My daughter also has bowel problems and cannot stand acidic foods. She refuses to drink any soda pop for this reason, and if she even tastes it she will become sick. She also frequently gets nauseous due to her impacted bowels. She is a picky eater, and she will get visibly upset and defiant if someone yells at her or challenges her in a way she views as threatning.

I just know that I will learn so much from you in regards to what my daughter is going through. I want to become a developmental psychologist and work with autistic children and their families, and help them find better stratagies to cope. Thank-you Julie for your post about this. I look forward to seeing more of your posts in the future. :)

Maresa