ABA has been reported to work wonders but the numbers do not match the performance of the affected individuals who have received the interventions.

Two things seem very relevant: (1) there is regression if ABA stops, implying that there is no full retention of what the child learns in one session to the next session within the same context; (2) there is no generalization either across different situations. If the child learns to perform a pointing motion fast and accurate in the classroom, the benefits of this transient gains will not necessarily transfer to another context, e.g. in activities of daily living such as eating, drinking, etc., all of which have embedded movements with similar biomechanical structure as those in the pointing behavior. Lastly, ABA depends heavily on prompts and external rewards so it does not teach the child how to spontaneously self initiate action. This lacking of ABA needs to be addressed because that spontaneous self initiation must be evoked somehow to lead the person towards self sufficiency and independence.

Aside from all of that, ABA seems to have some beneficial effects in directing the child's attention to objects and actions, and generally gaining a sense for the structure of the action. These are important aspects of the therapy that I believe could be complemented with other aspects of general behaviors so the child truly benefits from it.

There are many advocates of ABA but no real scientific proof of the benefits have been provided. There is a misconception that the metrics used to assess the outcomes of ABA are objective and therefore scientific. They are not. The gains in performance are being evaluated by eyeballing the child's behavior and penciling in some numbers based on a scale that has been arbitrarily constructed. Therefore it is impossible to reproduce with any kind of reliability the results of administering this therapy to one child and blindly come up with comparable indexes of performance across different therapists. 

As a parent you may benefit from learning the basics from a certified therapist and using those to teach your child some things, but how to evaluate the outcome of what you do is tricky for there are no reliable methods at the moment to do so. There is the method of verbally reporting what the person observes and scoring it somehow, but the human eye misses a lot of stuff that goes on beneath our conscious awareness while we are busy focusing on something that we believe is important. 

My lab is trying to collaborate with ABA therapists who are open to converting their scoring system into an objective quantification of the behavior to capture all aspects of it, but it is an uphill battle because people are not aware that the metrics in use are subjective and leave out critical aspects of the very problem that they are trying to solve in autism.

There is also a huge different across therapists. Some are really good and have a good eye for what the child likes. Others impose their criteria and force the child to do what they think is best disregarding the actual needs of the child and the stress that such repetitive drilling would cause on anyone, let alone a child affected by ASD.

I think that if you find a good ABA therapist he or she could teach you a lot, but stay away from those who disregard the child altogether. The child is the most important piece of the puzzle and the first thing that a good therapist must do is figure out what the inherent predispositions, capabilities and preferences of that child are. Then they can start from there. 

We have published some work on the roles that movements could play in all of this. I am inserting here some links. There are some movies too demonstrating examples of ABA task modifications that could help the child better cope with the therapy. I could post those in our website if you would like to see them.

My lab is trying to team up with members of the ABA community willing to do this in a more scientific way to start measuring the actual benefits and pitfalls of this intervention.

http://journal.frontiersin.org/Journal/10.3389/fnint.2013.00032/abstract

http://journal.frontiersin.org/Journal/10.3389/fnint.2013.00046/abstract

http://journal.frontiersin.org/Journal/10.3389/fnint.2013.00034/full

Thank You so much for the information. My child was never diagnosed unfortunately. If there were any therapists I would be very happy if there were ones.

I am sending my child to a private institution, they are trying to capture his sensory problems: such as putting everything into his mouth, throwing away things, learning him how to sit: a psychiatrist, and psychologist working together.

Out of no way out, I have also tried to write articles on autism, out of my semiotic prospective. But my child does not need theory,. He needs practical work and exercises. He is aged 5 now, goes to a private kindergarten. It is interesting to say that he follows smaller children in age in comparison to his. It was his own choice.

They accepted him there with lots of difficulties, but he feels fine. The state institutions say: we don't accept abnormal children., 

There is a friend of mine who has learned himself the ABA therapy and teaching his own child. He took it from an expert who is teaching him. The problem is teaching the child into his mother-tongue. The official language here is very  different from state's official system. That is why I asked if could be trained to do it alone.

Thank You so much indeed, and shall write again.

I

I hear your "pain". We are as we speak trying to build a practical solution for parents, but it will take us another year to have it ready. Best of luck with this and with the learning of the ABA technique. If you find a good therapist that will be a good start. It requires a lot of patience and willingness from both the therapist and the child.

Thank You so much. 

Out of the impossibility of finding the clue for my own child ( and many others, which are not registered officially as such), I have devoted some of "my semiotics" to this issue.  Naturally, that is not the solution. However, I found it useful to ask,as some of the parents here arbitrary take such a step. I can conclude from what You say, that it is not easy. I always ask the following question: what if the child starts being  hurt, anxious, frustrated? What shall I do then?  With other words, You have just proved what I have tried to explain to people around me, saying that I have done nothing fro him. What he needs, is the expert of the field.

Sensory integration problems, behavior problems, all are present. Except the social relatedness , the improved non-verbal communication, receptive sphere:: now is perfectly clear what he wants, and relational and interaction attitudes. It seems  that my science on the signs ( remember Piaget  was the one to call "a semiotic function" he period when the child starts uniting what he/she sees or perceives to its meaning).

At least he doesn't treat  subjects and objects, only related to biological and physiological interests. he exactly knows  who the people around him are. may I consider this at least a little success?

Thank You indeed, I shall be looking the files in details.

Best wishes,

Bujar.

Dear Bujar

I would like to present a contrasting view to that posed by Elizabeth. There is in fact ample strong evidence for ABA to the extent that it is considered the intervention with the strongest evidence of any interventions currently known and supported by a number of esteemed bodies including the Surgeon General in the USA (see: http://appliedbehaviorcenter.com/ABAEndorsements.htm). 

While a poor program may lead to prompt dependence and a lack of generalisation as described above, these days most programs take care of these issues. In addition, these days a quality program would incorporate elements of Verbal Behaviour, or Pivotal Response training, which ensure that the child learns to initiate. Furthermore, a good ABA program is always individualised and child-centred! Data collection is not subjective, but rigorous, and informs practice. 

Professors Karola Dillenburger and Mickey Keenan have developed an award-winning online parent training program for ABA called 'Simple Steps': http://www.simplestepsautism.com/ 

I hope you will find this helpful! 

Very best wishes for you and your child!

Angelika

Thank you so much. I shall look at it very carefully. 

Article Normality vs. Abnormality in a Child's Behavior (A Semiotic ...

I have attached my oqn views on Autism. 

Thank you indeed. 

Bujar

All of the responses gave similar advice as I would. I just want to add that often, failure of any behavior program is due, in large part to  inconsistent implementation. While programs need to address appropriate variables, parents often have difficulty in actually doing what is needed for any length of time. That is not a criticism, it is just the reality of working with your own child (or if a teacher, working with a large number of children). Programs need to be realistic for any given situation.

Bujar, I would like to alert you of an excellent excellent program in our state, New Jersey (USA) at the Reed Academy. http://www.reedacademy.org/

Perhaps you can get in touch with them there and ask how their program works. They train parents on ABA principles and on other principles that help them extend and translate their benefits from the therapies at school to the activities of daily living at home. I have been very impressed with these fellows. 

I think that you will find that as in everything there are good and bad therapists. If you come across a good one stick to her / him because you will see the benefits. 

ABA seems to do wonders when done properly and by well trained people but not everyone seems to have the rigor that it requires.

In the States there is a shortage of Board Certified Behavioral Analysts (BCBA) in relation to the demands. Because of lack of funding some of the training that BCBA are able to provide in short time periods are given to people who just have a high school diploma and no proper training for data collection that is done by pencil and paper. There is a lot of frustration among BCBA's because there is a lack of standard scales to speak a common language and the measurements by hand incur in a lot of inconsistencies. There are very good BCBA and those are genuinely devoted to the autism cause. They resent others that  can now quickly get their degrees online without proper understanding.

Private schools in the States can afford one on one treatments but they can go as high as 100-150K per year, which parents with low income cannot afford. The landscape is very complex in the States and it varies from state to state. It is not that the ABA principles do not work or work. We don't really know with certainty because the data is not reliable. This is rather unfortunate because with the therapy now being officially covered by medicaid in the US, the demands for BCBA will be very high. There is no proper infrastructure to support that kind of demand and maintain the rigor that it requires.

I have the proper training to understand the types of analyses being used both in the clinical practices and in the research arena.

One should not confuse emotional issues and our willingness for treatments to work with the rigor and objectivity of the scientific methods. In the long run the children will benefit from therapists with the proper expertise to teach the parents. I hope that the system is modified to accommodate the current demands.

My lab is currently working towards the gaining of an understanding of how the broad and complex landscape of autism works. Most people involved in this problem are really willing to help and genuinely devoted to the cause of autism, but we are finding that there is a lot of disconnect and frustration among parents, educators and therapists. We seem to be missing some "magic glue" that brings people together.

Dear Elisabeth,

I was impressed by Your scientific work, but who am I to tell that? Only a parent, who graduated English and Italian, and did his MA in Comparative literature and Ph D on Umbertto Eco's work. 

basing myself on language acquisition problems, as well as to my semiotic expertise, which is a science of generating meaning to artistic realities as well as  social context I have decided, out of my own point of view, to try at lest,do something for my child.

In our country, some American experts come  time to time, based on Voluntary response System offered to them by the Peace Corps organization of the US Government.  I had a chance to meet two of them. I am applying at least to have them here, at least train  the students of psychology for that purpose. Unfortunately they know nothing about ASD.

It should be understandable, to all respected experts of the field, that I am doing this thing out of noway out. I have understood everything about the phenomenon, but I cannot at least a bit, help my child. He lost his speech at the age of 18 moths after getting the disputable  vaccine.  Of course, I don't like to open that discussion here, as it is perfectly clear to me.

I am happy that at least three times a week he gets treated here in a private institution, ( for me a very short amount period of time) , and finally have accepted him in the kindergarten where he socializes, eats at scheduled times, etc.

he of course, does not do these things at home. 

No question, it is very difficult for me to learn ABA, and teach my own child, out of my  possible emotional situation in which I may find myself. I have tried once to make him say the word BALL by conditioning him. It took me 6 hours . He said the word, after being very anxious, having emotional outbursts , and heating me and himself. I was so afraid.

The reason why I have advanced this question, is a parent  who took the responsibility of learning ABA and teaching his child. He now speaks in a three months time. Honestly, I am very afraid to do that.  Owing to his  stereotypical and repetitive activities, eating what cannot be eaten sometimes, and other problems that belong  to the experts. 

There are institutions here which have disappointed me in this respect. I know I am not a good father that I am not sending the child there anymore.. The specialists here scream to the parents, say wait a minute etc.

I remember  when he was two and a half( almost three) when we noticed his behavior, the specialist responsible of evaluation of the child's disability said, wait a minute. We have waited for one hour. They closed my child in a room 3-4. he started screaming and crying. At that time he only used to watch cartoon and fixed his concentration on the TV. I have never sent him ( after the age of 3 ) to a neurologist. He also shouted at me and said : "Why your child is acting like this?" Who should know the answer, me or the expert.?

As much as we can with my wife, we are trying to treat him as a  normal child. 

Please forgive my details, as all children are different in this respect. 

I shall have a detailed look at the information that You have sent to me, and try to help him.  I am fully aware that all such issues belong to an expert. But when You don't have one? What would You do?

Thank You so much for the time to read my postings.

My best,

bujar.

Bujar, I am very sorry to hear about your troubles. We have similar issues here in the States, but we can at least find good therapists through word of mouth. The bad ones are problematic and can be easily identified by the way they treat parents and their affected children. Please do not be misled by the word 'expert'. Nobody is such a thing in autism. It is such a complex problem that it would be very arrogant to think one is an expert. Each one of us working on autism can only know so much.

I decided to get out of the lab and take all the walks of life in autism. I have talked in person with over 40 people now since last week (parents, therapists, educators, doctors, researchers, etc.) My goal is to reach 100 in a couple of weeks. I'm  collecting statistics on various things. Everyday I am driving with my student all over the state of NJ and now going to the neighbor states of Pennsylvania and NY, also to the Midwest in Indiana next week. We are also skyping with people and learning their pains and needs.  The lab is a very narrow world. Now I am beginning to understand the problem better, the real deal, the 24/7 issues that you describe here. There is no immediate solution yet because the problem has to be better defined. We are trying to home in where the biggest pain lies and who is willing to address it. So far parents seem to be the answer.

"What will happen to my child when I am no longer around?" they ask me over and over. I of course have no answer, can't even imagine what is like, even though I see it in the lab with the families and the fellows that come all the way from Texas and Washington DC and Virginia, etc on weekends to work with us in our research, to help us help them. 

I'm very sorry, but we are working hard. We'll find a way to connect the dots better. All the best to you and your family.

Thank You so much.

Well, I call an expert that one who is trying so hard. I know that nobody can find a clue to that. I don't have even have a diagnosis. he had  epileptic attacks since the first day of birth, lasting 20 seconds and was diagnosed with G40 ( general epilepsy), i was furious. I don;'t even want to recall such days, when while he was a newborn and in the intensive care, the neurologists, pediatricians and psychologists, having conflicts among themselves in front of my eyes and my wife' s eyes. All of that passed at the age of 4 months. Then, after a normal development until the age of 18 months, when everything stops.

For me, the worst thing is when everybody points me with a finger: "Look at him, he is doing nothing for his child". I have done the impossible Elisabeth. very shameful to say in front of You that I have participated in Congresses and Conferences with doctors and read about the semiotics of autism. I am preparing a new text 'On a Paradoxical Kind of Communication of a Child with ASD". The World Congress of Bulgaria of Semiotics has prepared a special session for me: 'Educational Semiotics", where I have to present that paper based on my son's behavior. 

I am a scholar after all, doing semiotics, i.e. trying to unite, as we say form and contents. In Autism what such  people see to be able to unite with meaning and verbal processes.

That is all I can do. Am I wrong? 

Thanks on Your  words for the parents. This problem seems to be global, and shall be improved on the basis of those who are very familiar with such problems.

I would be happy if You could sometime see my child on Skype.

My very best wishes to You and Your family,

Bujar.

HI Bujar, My skype name is elizabeth.b.torres.yanez

I am in the Piscataway city of NJ, USA

I am traveling to the Midwest (Indiana) till August 3rd to continue my interviews with parents and top researchers and therapists there. I will be back on the 4th. Send me an email to [email protected] and I will be more than glad to say hello to your child via Skype. All the best to you.

Thanks Elisabeth. I shall do as You say.

I am looking forward to contacting You in person through Internet.

My best wishes,

Bujar.

Hi Elizabeth,

I understand that Rutgers is developing a center for adults living with Autism. Do you know about this initiative and, if so, what is the status? I am very interested in finding out about this program.

I would appreciate your feedback.

Thank you.

I would advise you to subscribe the newsletter of http://www.iloveaba.com/

It is quite good

Hope it helps

Thanks Francesco. La ringrayio in anticipo.

Bujar.

You are very welcome. You're Italian is very good!

Francesco

In addition to what I've already written, I would advise you to search for more scientific articles about autism and applied behavior analysis on the Jpurnal of Applied Behavior Analysis (JABA) - here the link http://onlinelibrary.wiley.com/journal/10.1002/(ISSN)1938-3703/earlyview

They're all free

Furthermore, if it can be of any help, there is a good school in Sarajevo. The director is Dr Nirvana Pistoljevic (https://www.researchgate.net/profile/Nirvana_Pistoljevic) 

http://www.ba.undp.org/content/bosnia_and_herzegovina/en/home/presscenter/articles/2014/03/14/program-edus-sa-fokusom-na-sposobnosti-do-kvalitetnijeg-obrazovanja/

I worked years ago as an ABA therapist, employed privately by a family. I would say with good information and a background in psychology or mental health you could definitely promote the principles of ABA in day to day life. To run an independent programme takes a lot of money, time, commitment and management and requires good support and supervision but the impact can be huge for the child. Many families do this independently in the UK with positive results.

Good luck!

Hi Kathy,

I heard about this but have not seen anything official. Other people in Computer Science and I submitted a grant proposal to an internal call for proposals to help with automation of house monitoring, navigation and other things that could in principle help empower adults in the spectrum and enhance their autonomy in general. We are waiting to hear back.

I heard that someone very wealthy at Princeton donated the funds to Rutgers and Rutgers will build the houses on campus, but I do not know in which campus (Rutgers is huge!)

There is an upcoming symposium on Sept 13th to present the efforts in autism research and practice at Rutgers. Perhaps someone will talk about this initiative. If you are in the area come by. I am not sure yet where the symposium will be but I will have to find out since I am scheduled to talk about my research and the NJ Governor's Council grant that funded it. The initiative is through the Robert Wood Johnson Medical School so the symposium may be in the Busch campus. It will be announced soon. Stay tuned for that one and they may talk about this there.