Ethical challenges to autism treatment

Dear Shazia,Dr.Saima,Riffat ,Qazi sahab and Waqar Sahab,
Assalam o Alaikum,
I just read this page,pls send your feedback about it.

Ethical challenges to autism treatment
From Wikipedia, the free encyclopedia

Ethical challenges to autism treatment have been made by people who feel that autism therapies intended to be helpful are actually harmful to autistic people. Some of the people who have made these ethical challenges are autistic people who have been given these treatments (although they do have neurotypical allies who are parents of autistic children). Many of the people making these ethical challenges come from the autism rights movement where this is considered an important issue.

There are parents of autistic children who have responded to these ethical challenges claiming the benefits their children received from these treatments is too important. Many of them also dispute the amount of harm caused by the treatment.

Ethical challenges to applied behavior analysis

People have made ethical challenges to a popular treatment method known as Applied Behavioral Analysis (ABA). Critics of ABA argue that ABA does not actually improve the skills of autistic people, but instead only teaches them to mimic neurotypical behavior without really understanding the meaning of the social cues they are using. ABA critics also argue that ABA teaches the autistic person to suppress natural and harmless stimulatory behavior (which is called "stimming" for short). There have also been claims that ABA only "works" because of barbaric aversives that often cause posttraumatic stress disorder, anxiety and clinical depression later in life. Since use of ABA has become widespread relatively recently, its long term consequences and risks have not been studied.

ABA critics have noted there have not been any double-blind studies that validate ABA. Some autistic children develop spoken language and other skills without ABA. Additionally, IQ increases claimed in ABA studies are believed to be meaningless by many due to flaws in intelligence testing.

Roohi-
ABA as a field has evolved from "aversives" 30 years ago...to "natural environment training." or "errorless" training now ...which does not use punishment.
It has its uses-ABA has helped my son with learning certain basic skills when he was a toddler-it helps in task analysis, and learning daily living skills. And a lot of what parents naturally do is actually ABA-giving a hug when child does well on work, ignoring bad behavior and teaching alternate good behavior choices, giving incentives for child to follow rules, etc...
Having said that-Any method that is used in a cookie cutter approach will fail...because every child is unique.
I am using many approaches to help my son-to help teach academics and give my child a voice thru letterboard I use RPM, he is going to speech therapy, occupational therapy, and physical therapy-I use sensory integrative techniques to feed his need for stimming and ground his body-he has pointed out thank you, mom. I am even incorporating some of the modulation and referencing from RDI. The best approach is a combined approach...the more you know about various methods-the more tools you will have at your disposal to teach your child ... anything is possible for them!
Autism as a field in continuously evolving...as parents we have to gain knowledge in all these fields and tailor our approach to our children.
Shazia
P.S. By the way, how has your teaching been going? What have you discovered about your child's particular learning style?

Dear Roohi

The issue you have raised is very important and something I feel very strongly about which is why I chose to follow Son-Rise because it is so child-centric and parent-centric with a huge emphasis on a loving and accepting attitude -- not to say that there are no critics of this program. I think all therapies by and large have some ethical challenges.

A parent of a child with autism is completely in charge of a child with autism and it is their responsibility to address these challenges. One also does not need to follow a program like a religion. Even in a religion there are flexibilities. Parents can and should tailor according to their own child's issues, their situation and what is doable for them. This is why it is so important to be informed, to educate oneself, question therapists, analyse therapies and do things that are not intrusive/harmful for the child. God has given us, the parents, a huge responsibility and we need to manage it keeping in mind that we are responsible for another life. The parallel that I see is that of a ruler of a country and the people over which he/she governs. The ruler are the parents and the people are the children.

My best to All

Mehreen

Dear Shazia and Mehreen,

Thanks for your replies,I'm looking forward to get more replies by other friends also as it always help me a lot .

Mehreen I'm totally agree with you ...actually I wanted to say same as you said but my english is very poor so can't say it in such a nice manner as you did..pls tell us more about the son-rise prog.

Shazia,acc to your suggestions I made picture cards of those children movies and tv programs which my son loves to watch,I also made cards of the logos of some products like Pepsi, Cocacola, KFC , Mcdonald,Pizzahut or others which he can easily recognise,I put these cards on a table and show him one by one and ask him,what is this,he tries to speak,like he says spa...for Spiderman...and ja for Jungle book...and joge for Jeorge of the jungle..pesi for pepsi ...etc.he easily put his hand on the card when I ask,where is this and that...I also made a picture book by myself of his favourite things and bought some other pictures books too,he likes to see by himself by turning the pages and tries to point out when I ask,where is this and that..I also made a picture folder in my documents(computer)and here he shows great interest to see these things on screen rather than books and cards he loves to see them and set them as a desktop background.
Thank you Shazia once again.

best wishes
Roohi

Roohi, have you thought about expanding the pictures in book as a form of "schedule"...where he opens the book, sees picture of activity-does activity and then you ask him to open his book and see what is next? Also, have you thought of seeing if he can match pictures to word?
You can start with a few pics at a time...this will get him ready for following school schedule in future.
Shazia

Dear Roohi

For details on the son-rise program please see my post of 15 Sept 2005 and visit the website son-rise.org. It is a good program to build a foundation before trying a combination of therapies as Shazia has said. No one size fits all. Autism is after all a spectrum. Also the son-rise program addresses the parent and makes the parent motivated to act and become strong to handle the challenge. It also helps the parents become comfortable with the autism monster.

I am also incorporating Hanen with the Son-Rise Program. Hanen is a good program again non-intrusive for developing and enhancing speech in children. The other two that I plan to check out are RPM and RDI. I have been reading about them but to date have not incorporated them in my programmes for the kids. Sensory therapy and occupational therapy alongwith diet are also important. GFCF works and so does reduction/elimination of sugar and addition of supplements. I use homeopathic treatment for my kids about which I have talked about in one of my earlier posts. I have visited a DAN Doctor but other than the diet and the supplements I have not tried any of the other protocols. Please check out Saima's recent post in one of the other threads regarding the various levels of therapies one should be working with which she has expalined wonderfully.

Find out all possible info about various therapies and then only start applying the ones that make the most sense to you but don't wait too long. Also be prepared for a long haul.

All the best

Mehreen

Dear Roohi, Mehreen,
I should make it clear about developmental therapies..
Son rise, RDI, and Greenspan (DIR) are under the umbrella of "developmental therapies"- they teach social , communication skills and personal engagement...what are called the "core deficits" of autism-they do not address sensory issues or motor issues.
Mehreen, RDI is similar to son-rise as it also goes into the world of the autistic individual-: it teaches relatedness to others, dealing with stimuli (modulation), and the ability to quickly adapt in a changing environment, but it does not look at language acquisition, or motor skill improvements-so it is often used with Aspergers/high functioning kids who have some verbal ability and good motor skills already...

Mehreen, did you know they have begun to develop combination ABA/son-rise type programs like "growing minds", etc? there are many programs like this that are trying to use the best of all methods..
http://autism-program...

In regards to RPM, is not a developmental therapy or "therapy"...it is an academic teaching technique that can be used alongside any method-it looks at memory retrieval, sensorimotor ability, abstract thinking, reading, language acquisition, deductive reasoning for math, etc, and in the course of teaching nonverbal children learn to use a letterboard for communication.
Shazia

Dear Shazia

Thank you for your response.

Dear Roohi, Mehreen,
I should make it clear about developmental therapies..
Son rise, RDI, and Greenspan (DIR) are under the umbrella of "developmental therapies"- they teach social , communication skills and personal engagement...what are called the "core deficits" of autism-they do not address sensory issues or motor issues.

Here I agree with you that for these therapies do not explcitly work on sensory/motor issues

Mehreen, RDI is similar to son-rise as it also goes into the world of the autistic individual-: it teaches relatedness to others, dealing with stimuli (modulation), and the ability to quickly adapt in a changing environment, but it does not look at language acquisition, or motor skill improvements-so it is often used with Aspergers/high functioning kids who have some verbal ability and good motor skills already...

Since my daugher has aspergers, is 11 and has speech, RDI is what I will probably be incorporating with Son-Rise if I feel the need. I need to work on her sensory issues and am looking for an OT who could work long distance with me. Do you know of anyone? And then of course I have to tackle academics. She is not going to school because of sensory issues

Mehreen, did you know they have begun to develop combination ABA/son-rise type programs like "growing minds", etc? there are many programs like this that are trying to use the best of all methods..
http://autism-program...

Yes I am aware of Growing Minds.

In regards to RPM, is not a developmental therapy or "therapy"...it is an academic teaching technique that can be used alongside any method-it looks at memory retrieval, sensorimotor ability, abstract thinking, reading, language acquisition, deductive reasoning for math, etc, and in the course of teaching nonverbal children learn to use a letterboard for communication.

Since my son is non-verbal I want to explore RPM rather than TEACHH which is more like ABA and relies on pecs. I gave up on ABA a couple of years ago when he started to get too upset sitting on the table and chair. If a child is upset, he will be unhappy and will tune out and then it becomes impossible to teach because of negative associations. He can recognise all the letters in the ABC and can also say most of them. He has also begun to say some half words. I want to incorporate some principles of different therapies using the principles of son-rise to help him read and encourage his language and I though RPM could do that.

Again as I said earlier I am still exploring these two before incorporating them in my children's home-based programs because almost all therapists in Pakistan want to use the cookie cutter approach and I want to be very sure before I start combining approaches.

Shazia

My Best and Thank You

Mehreen

Dear Mehreen and Sahzia

i read your responses and to tell u the truth for me its information overload and i am a bit overwhelmed .......................... u know why ???? well because u guys know so much and being in the field of autism for ten months and living in Pakistan i just know a little bit..... i learned the method of son-rise from a DVD i received from America and got my son to make eye contact with me as i joined in with him in tearing tissue and he started giving me eye contact with in one day..... it was amazing. maybe that was the first day he saw my face in last six months.. but his therapist is applying ABA on him..... and i do that at home as well and i think both techniques are working for him............. but i dont know much and i think ill have to sit down and have a session with Mehreen to learn more about it. so thanx again both of u for sharing your information.....
take care and bubyeeeeeeeeeeeeeeee

maleeha

Mrs Maroof, to my knowledge ABA is one of the multiple therapies which has been very popular. You are right there are not much studies regarding ABA but same is the case for most of the therapies. To my experience one model doesn't fit all, and every therapy has to be individualized. Same way if some thing works for one doesn't necessarily will work for the other and vice versa. When looking at the web sites, for example the site you mentioned about ABA, it's important to look at the credentials of the people and there affiliations, who are making the negative or positive comments.
So in short any thing which work fora child regarding communication, socialization and teaching is helpful, no matter what name you give to the therapy.
Regards
Waqar Azeem

Dear Shazia,Dr.Saima,Riffat ,Qazi sahab and Waqar Sahab,
Assalam o Alaikum,
I just read this page,pls send your feedback about it.

Ethical challenges to autism treatment
From Wikipedia, the free encyclopedia

Ethical challenges to autism treatment have been made by people who feel that autism therapies intended to be helpful are actually harmful to autistic people. Some of the people who have made these ethical challenges are autistic people who have been given these treatments (although they do have neurotypical allies who are parents of autistic children). Many of the people making these ethical challenges come from the autism rights movement where this is considered an important issue.

There are parents of autistic children who have responded to these ethical challenges claiming the benefits their children received from these treatments is too important. Many of them also dispute the amount of harm caused by the treatment.

Ethical challenges to applied behavior analysis

People have made ethical challenges to a popular treatment method known as Applied Behavioral Analysis (ABA). Critics of ABA argue that ABA does not actually improve the skills of autistic people, but instead only teaches them to mimic neurotypical behavior without really understanding the meaning of the social cues they are using. ABA critics also argue that ABA teaches the autistic person to suppress natural and harmless stimulatory behavior (which is called "stimming" for short). There have also been claims that ABA only "works" because of barbaric aversives that often cause posttraumatic stress disorder, anxiety and clinical depression later in life. Since use of ABA has become widespread relatively recently, its long term consequences and risks have not been studied.

ABA critics have noted there have not been any double-blind studies that validate ABA. Some autistic children develop spoken language and other skills without ABA. Additionally, IQ increases claimed in ABA studies are believed to be meaningless by many due to flaws in intelligence testing.