Sunday, March 13, 2016

Autism, ABA Therapy, and My Next Step?

Usually when I write a blog post, it is because I want to share something that is important to me, that I discovered, something that I think will help other people. But this post isn't going to be anything like my standard posts. Instead of it being my sharing with you, it is my asking advice on a topic that I am not as well informed as I would like to be.
And though I have various Facebook groups that I'm in, ones that I joined to learn more about Autism Spectrum Disorder, now that it has been confirmed that my son, Ike, is, indeed, on the spectrum, I would rather ask my blog readers what you think, as you've been following my parenting journey for the past few years, where I've explained my viewpoint and parenting style and decisions, and I feel my readership is a community of largely likeminded individuals.

The question, specifically, is about my next step regarding my son's Autism journey.

If you didn't read already my post about how I explained to my children about my son's Autism, I recommend you read it first before reading the rest of this post, as it elaborates more about where I am coming from in terms of mindset.

In the past few weeks I've been thinking a lot about what I want for my son, now that I have an official diagnosis.

1) What I want for him is to have as many opportunities as possible opened to him that suit him, and not have doors closed to him because of his Autism.
2) I want to give him the best shot at success in life. My definition of success specifically is that I want him to be able to be a productive member of society, in a way that suits his nature, taking into account his strengths and weaknesses. I want him to be able to have happy, healthy relationships- also with family members, also with friends and neighbors, and eventually I want him to be able to have a happy and healthy marriage and be able to be a good father one day as well.
3) And I want him to be a happy person, with self confidence, who knows he is lovable just by nature of being himself, that he doesn't need to be someone who he is not, in order to be worthy of love and acceptance.
4) And I want my son to be intrinsically motivated, and not to need to be bribed or threatened with punishments in order to get things done.

5) And for me and the rest of my family- I want to be able to have a happy, healthy relationship with him, where we both are able to try to understand what the other is feeling, and use that as a cornerstone of building our strong relationship. And I want him to be able to do the same with his siblings.

When I mention to people about the first and seconds of my hopes and goals for my son, because of or in spite of his Autism diagnosis, many suggest all sorts of interventions. And I want to learn, because I don't know enough about the various tools that can be used to help people with Autism have as happy and successful of a life, whether in the workforce or in relationships, as possible.

And often, I hear people recommending ABA therapy when I ask for what they suggest I do next. Because, according to officials, "ABA therapy is clinically proven to be the most effective way of helping kids with Autism."
And I don't judge parents for choosing to do ABA therapy, especially in cases where their child's Autism is very severe.

But personally, after doing a lot of reading about ABA, it seems to be exactly the opposite of my parenting style. Basically, bribing and punishing a child to get them to comply with what the therapist decides is proper behavior. And sometimes, the bribes are via withholding affection until a kid earns it.

Reading this immediately throws up a bunch of red flags for me, because I am very opposed to making a child need to earn displays of love. Being loved and being shown love is something that I think is the most important thing for a child, and what gives a child the feeling that is is lovable and loved and worthwhile, and it is what builds a child's self esteem. I don't want to get into specifics, but I've seen first hand what bad things can happen when a person needs to "earn" a parent's love.

Defenders of ABA say that you can't argue with it's effectivity, that it works, and its success speaks for itself. But the question is- what is success? What you see on the surface or what goes on beneath the surface? As one of the articles on ABA wrote- if you punched a kid every single time he touched something he shouldn't, he'll stop touching it eventually- hence it is "effective"- but does that mean you should argue that punching a kid for touching something he shouldn't is the right way to go?

I'm not trying to change anyone's mind about ABA, but from what I see, it goes against my parenting style/views, and I feel it would not contribute towards goals number three and four.

Here are some articles I read arguing against ABA.




All these seem to pinpoint that for the reasons I mentioned above, ABA isn't something I would choose for my kid, because I think they are counterintuitive to goals number 3 and 4.

However, I still would like my son to have as many opportunities open to him as possible, and I want him to be able to have happy, healthy relationships with people... and I will admit that something more probably needs to be done than what I am doing now. Because he does have frequent meltdowns and there is a lot of frustration going on in our house on a regular basis, also from him, and also from other family members, including myself...

But if not ABA, then what?

If there is anyone else with a similar parenting style to myself, who opted against ABA for their autistic child, what yes did you choose to do, to help your child have the greatest chance of success in life, while at the same time, not crushing him emotionally, and building up his self esteem?

Thank you.

Greatly appreciated.

And if you are someone with a parenting style similar to mine, and you decided to go ahead with ABA therapy for your child, can you elaborate why you decided to do so?

I really am at a loss; I don't know where to go from here, and hopefully those of you who've been with me along my parenting journey thus far can provide some much needed insight.


  1. Hi Penny,
    I've been an avid follower of your blog for many years and have never commented until now. I had to respond to your query since I really understand your position. I have a nine year old daughter with the same diagnosis as Ike. She also has severe adHD and had significant behavioural concerns. For hee safety and the safety of our family, against my initial beliefs we had to medicate her. A few months ago things were really not OK and she was also having very difficult meltdowns. We brought in an aba therapist to our home. It was probably the hardest thing for me to do after medicatinh her. Bringing a stranger into our home is very difficult, especially because I was afraid that there would be judgment about our culture. Ultimately, it was the best thing that ever happened to us. Unbelievably, we managed to completely eliminate her tantrums which we never thought was possible. We eliminated all aggression to her siblings. We did all of this in a most loving way and including her in the decision to try each new behaviour plan. She had everything explained to her. I hear what you're saying about effective not being your goal but what you don't realize is that my daughter is so so much happier BH! She feels so much more in control of herself and realizes what a great benefit it was to her. Certain parts were difficult to implement but it was all for her sake. This therapy gives me hope that she can one day integrate properly into society. If you have any question I'm happy to help.

  2. Mothers are the first line of offence and defense. Read all you can and ask the therapist and psychologist about strategies they use and adapt them in your everyday life.Pay attention to details and above all,relax! The children especially those with social problems are very sensitive to the "alarm" signals. You will be his indicator of success.Please keep in mind that what you think is "good" might not be his "good" but then again who has the monopoly of righteousness?
    check this http://nypost.com/2016/03/13/theres-a-link-between-autism-and-genius/
    Good luck! Nothing worth is easy.

  3. Hi, I've a brother-in-law with high-functioning autism and also have an MEd in how to teach children with this neuro-atypicality and what I would say is that first and foremost people are individuals and all the people around Ike every day will have a better idea about what works for him rather than a set intervention plan. It sounds like you are already doing really well !

  4. Hi i recomend checking out the blog suburban autistics and also respectfully connected ther are alot of writing on unschooling autistic children and also some interesting viewpoints on aba therapy. Hope this helps :)

  5. Have you heard of Floortime? It's also been proven effective, and it seems to be more up your alley. There are therapists in your country who provide it, although I don't know if they can be hard to get into. (The ones I know of are...) Floor time is a therapy model developed by Dr. Stanley Greenspan. His website offers training courses geared to both therapists and parents; they're not so cheap, but I think they're fairly priced. You may want to look into those.

    It really depends on what sort of issues you'd like therapy to help with--emotional awareness, sensory issues, aggression, out-of-control behaviors? Those will all warrant different approaches. You can look into emotional therapies as well (that's the name for them in your country)--getting a good therapist who can work with your son on recognizing emotions, processing them healthily, learning to overcome the triggers that may set him off--is vital.

    Best of luck--with such an involved and proactive parents, your son is set up for success!

  6. If your son is High Functioning Autistic or Asperger's, ABA doesn't really work or not at all. You will need CB therapy to deal with the anxiety. We wasted many years on ABA. ABA if done properly is a teaching method, punishment is never to be used. It's always positive. One of the main factors with Autism besides communication is anxiety and control, therapy is used to get that under control. If your son needs to learn how to do something, whether it's how to behave at a social function or writing his name, find a way to teach it to him in a positive way. You could look into TagTeach. And to the analogy "if you punched a kid every single time he touched something he shouldn't, he'll stop touching it eventually- hence it is "effective"" That is not true, there are some that will always touch it. It won't matter if the approach is positive or negative. Their brain is set up that way. You can't start breathing through your elbows just because someone is shocking you. The person chooses to follow through with the therapy or they can choose not to.
    I can tell you that you can't just leave the child to live their own life. The stress of trying to figure out our world is overwhelming. Aspies and HF Autistics have a very high rate of suicide. They need to be taught coping skills. My 9 yr old starting talking about killing himself after 3 months of being back in public school. It turned out he wasn't being supported in school. It can happen very fast. Cognitive Behaviour therapy is used for coping skills.
    Try to find a happy middle to what ever therapy you choose for your son. Think of therapy as his wheelchair, with out it, he won't be going anywhere. Most importantly, pick a therapist who has at least 10 to 15 years of experience working with Spectrum kids. Autism is so different from any other disability. Many therapist only have book knowledge. Since every Autistic person is different book knowledge is not enough. Ignorance equals abuse when it comes to Autism. You have supported your son in such a loving way, your half way there. Joining some social groups are good for your son to learn social skills and a great way to make friends who are just like him. Which I feel are our kids true peers. He can be himself with kids like himself and they know what he's going through. And the best part, if his friends are going, he'll go along with them, even if he's afraid to try something new. It's the one time peer pressure is a good thing. Good luck.

  7. Followed for a while, never commented. As a nurse and someone who is most likely on spectrum, I would say try it! What do you have to lose? If you don't like something they do you can always stop. However your son's brain will never again have the same neuroplasticity as it does now so the earlier you start the better. If it can help him relate to other kids, learn social skills, and help sensory/overstimulation issues I think it would be worth it! I wish I would have had a little more help growing up. Also I would note all the "articles" you site are just blog posts, not any kind of scientific research. To be fair they make some good points, especially about the stopping stimming if it is helpful to the child to calm down. That being said, maybe the child would like the option of controlling stimming, say for a class presentation or something, then they could go back to their usual behavior. But at least they would have the option. Ultimately it is worth remembering you and your son would be the most important members of the care team! You would pick the priorities, say social skills and listening if that is important to you. And again, you would always have the option to stop or change your plan of care. You will never have the chance to go back however, and if your sixteen, eighteen, or twenty year year old son is angry and frustrated that he can't make meaningful relationships you may look back and regret your decision. All the best on this journey, I hope you find a path that works for your family!

  8. You might want to look into the Floortime model.

  9. I have a son with severe Autism and The Son-Rise program helped us with all of the above goals you have for your son. It's much more child-centered and respectful than most ABA programs. www.son-rise.org They offer scholarships! It also gave me tools to be a better parent to ALL of my kids. The best part is that parents are in charge of the program so there's no arguing with therapists! lol
    Best of luck to you and you child!

  10. Ok, since you and I are both expats with autistic kids... one thing that helped me a LOT with my ASD/SPD daughter was the parenting posting on A Life Overseas blog (you can search by topic). They deal with Third Culture Kids (how to parent, nurture, protect, etc). What really struck me was that when we are talking about kids who have a different culture from their parents (because of where they respectively are raised)... we are also talking about autistic kids. SOOOO many of the tips on dealing with cross culture kids flowed over into dealing with a kid who just "doesn't fit" or "doesn't understand" social cues, and rules, and behaviors. I had been kind of accidentally following an ABA standard with my daughter. Look, it has it's good and useful areas (take what you can and toss the rest, like all things)... but the minute I started engaging her on important areas, embracing her on (at least for the moment) hopeless areas, I stopped apologizing for her, and made reasonable compensations... our life got sooooo much better. We have a MUCH better relationship now because I have learned to accept that she has a different way of thinking about things... a different "culture" so to speak, and she at almost 8 has learned that her mom has a different way of seeing things. As she grows we are able to discuss differences of opinion and acknowledge things like "I know that doesn't make sense, but you have to trust me that it is annoying" (social behaviors). Also going to trusted friends (who are now used to this) and saying, "B____, does it bother you when my DD and other children xxxxx? Yes? Ok, why is that?" And this is not done in a in-your-face-kid kind of way, but in a pursuit of science. Autistic kids loose evidence. If you can't demonstrate the importance it's not going to sink in.

    Anyway, that's my 2 cents. I am very interested to follow your journey because your parenting is so much like mine from what I can see on your blog! Good luck!

    And have a look at A Life Overseas blog!

  11. Do not define your child based on a diagnosis. my son had HFA and is fully funcioning. He went to a mainstream school and is currently in his 3 year college. He is still slightly socially awkward and feels bad that he doesnt have close friends. ABA was not for him as he was too bright for it but floortime might have been better. i mainly worked hard on social skills

  12. Hi, I briefly read the comments you have had, and am kind of surprised that so many of them lean toward this therapy or that. We also homeschool, and if you must label our style, we started out many moons ago as school at home, and now, based on our kids different needs, we are pretty much radical unschoolers. My younger child once upon a time (like 7ish years ago) had a diagnosis of PDD-NOS, The speech therapist started out using an aba influenced style with her, and every instinct I had was "this is wrong!". I let it go for a while, she was still under 3, and finally just pulled her out. She was clearly not responding well, and it was way too expensive. I was paying beyond our savings for someone to permanently scar my child. Ridiculous!
    Well, once I pulled her, now what? I was lucky enough that I had sat in on the bulk of the sessions, which is how I knew what was really going on, but also how I learned some of the types of therapies she was using. Those were things I could easil handle at home, and I did. My child who was never supposed to respond to her name is now 10, and usually comes when I call unless she is engrossed in a project and basically ignoring me.
    Part of what I think the gift of homeschooling is giving both of my kids is their self esteem. I'm not sure how many of us came out of high school with out identities and self love intact, and my goal is to give that gift to my two kids. Homeschooling allows them to work at their pace, etc, I'm sure you know the drill. How do I treat her? In the same way I treat her big brother. Remember, they are working at their own pace, so while that is different for each of them, that is also how most unschoolers work with their kids. And, just like with my son, I give her feedback in terms of what she needs to work on, as well as her strengths. She is aware that whenever she is ready to work on her stutter, we will go see a special teacher. Right now she is happy with it. If the rest of the world isn't, I could not care any less. We are aware of what she needs, as is she. As soon as she is ready, anything I cannot provide myself will be provided for her.
    How is she now? Fantastic!! She is an artist, loves to sculpt, draw and make paper dolls, loves My Little Pony and lots of other "typical" 10 year old things. She walks and talks, her vocabulary itself is actually above average, to it was when I had her tested at 8. It's just the stutter and the extra time it takes her to get the words from her brain and out of her mouth.
    Any advice I would give would be to continue to listen to your mama instincts. YOU know him better than anyone does, except for himself. Take the time homeschooling gives you to find his true self. What HE finds frustrating and what HE wants to work on. The rest will come in time. It's the same concept as with our other kids, with some extra work of things that don't come natural.
    In the end, don't we all have extra things we would like to work on, to improve ourselves?

  13. I am autistic (what used to be called Aspergers) and so is my son (language delayed type).

    ABA is NOT a monolithic approach and this is why I dislike flat "ABA is bad, because Lovaas was abusive" answers. ABA is a SET of behaviorally based approaches. We also use behaviorism when we parent our NT kids: we reward/reinforce desired behaviors and discourage bad ones.

    ABA based approaches did help with my son especially before he learned to speak (I really liked Verbal Behavior which focuses on the function of language for the child). It's not true, as a blanket rule, that ABA is not helpful with "HFA" kids: it depends on the skill. ABA is most helpful with skills that can be broken down and analyzed; it's not so useful for higher order, more complex issues. You can teach a 3yo the basic idea of turn taking using ABA; you're not going to teach a 12yo how to have a conversation.

    Some ABA opponents compare ABA to dog training (some approaches are) and that Floortime is kinder... but the essence of Floortime, IMO, has a lot of the same problems as people's ABA complaints: the goals of Floortime (just read the wiki) are to make autistics behave like NT people. If you don't feel that's a valid set of goals, why would Floortime be any better?

    The key I found with therapy is to define your goals FIRST. You don't do ABA just because ABA is what you do. You use ABA techniques when they provide the structure you need to meet your goals.

    There are different ways to do ABA based therapy: one is the classic intensive tabletop method, and the other is Natural Environment Teaching, which is play based. You can use ABA methods (which are data collection, behavior analysis, and reinforcement) in a naturalistic setting! Some skills may need to be taught tabletop style, but I'm personally not a fan of a lot of it. PRT, which is an ABA based intervention, also uses NET and some researchers say a PRT session looks a lot like a Floortime one.

    The other component of ABA that people don't always emphasize is that ABA means analysis. Which is, we look to see what produces a behavior, and its consequence. It's not just about how we change the behaviors. For example, if you learn that a particular action or situation provokes a meltdown, you can change the situation (environmental modification).

  14. Same commenter as before: There are 1000 therapies for autism. It is true that behaviorally based approaches have more evidence than a lot of others. That doesn't mean ABA is awesome. It means some of the other stuff is snake oil. I don't think Floortime is snake oil, by the way, but I don't think the research is there yet.

    things that DID help: OT, though OT is not the panacea that some people think it is, and I think sensory issues can occasionally be overemphasized. It's most helpful for sensory avoidance rather than seeking but sensory avoidance therapy can also be upsetting. OT for any kind of motor issues, absolutely.

    For a hyper, sensory seeking type kid--lots of exercise, swinging, swimming, trampolines. (this is my son)

    LOTS of structure. ASD kids want and need structure. Schedules, timers, things they can see. Part of behavioral therapy is even about setting up these structures.

  15. Have you read the book mother warriors by jenny mccarthy? It gives a great insight to parents experiences with various therapies.

  16. High Functioning Autism can be managed and one can succeed with it and manage it. Most important is education and overcoming obstacles. He needs a disability teacher and to be encouraged to read and advance in many languages. As one with Aspergers myself, I taught myself how to study (at age 20) and how to overcome my genetic inborn barriers. "Ike" can't be expected to do that so he needs help. Being part of a family with multiple members on the autism spectrum is a challenge that can be overcome.

    Dr Penniless Dad, COL USAR, FACC, FACP
    Senior Cardiologist ________ Hospital

    1. Spot on. My ASD child was once labelled 'surly' and no teacher saw any potential in her. Today she is a law student doing well in her studies. But her journey has been a hard slog. Once she reached her teens she became increasingly aware that she was different and this in turn lead to feelings of depression and anxiety. We obtained the diagnosis when she was 15. From this point we focused on her educational outcomes, social outcomes and mental well being. We engaged speech therapists (one specialising in education to bring her up to speed with her school work and the other to help with her social language) and a psychologist specialising in autism. Once she was supported practically and emotionally she was able to power ahead. It was a team effort that addressed things such as structure, organisation, concept of time, and many social skills the rest of the world takes for granted. With the right support ASD is an asset, not a disadvantage.

  17. I can't help but wonder if most kids feel different than others. I think if asked most would say they do. This is not to question your son's diagnosis, but is an observation I have made.

  18. I have followed your blog from time to time and taken measures of great advice when it was helpful. Yes I understand your concern with ABA but I think you have a grave misunderstanding of what the therapy is actually about. I am not an advocate for ABA as since Autism is a condition that is genetic and contains over 250 possible combinations and mixtures every autistic child is unique and different, so will be the choices of how to give your child the best. I have had a very long and difficult struggle as my child is very severe and non verbal. I wish you best in your journey, please know there are a plethora of options out there and just as many people looking to help in your journey. Finding people you know who can help with your journey and always being there for you child is your best tool. Never give up and know that you have one huge strength not many have, you have thousands of helpful followers who want to help you in your journey. Please go to us as much as we have gone to you. Good luck and god speed.

  19. My daughter of 10 years old was diagnosed with ASD at the age of 4. Her problem of delayed speech development, social interaction avoidance, physical muscle weakness surfaced at the age around 12 months old. When my child was 12 months old, she received her first professional service: physiotherapy. The physiotherapist was not an ABA therapist, but she used the ABA method: she passed the ball to my child when my child stood up. The therapist kept the ball if my child refused to walk to her. In 4 lessons, my child learnt standing and then walking.

    The second professional service that my child received was speech therapy. The speech therapist also was not an ABA therapist, but she also used the ABA principle: she passed the toy that my child tried to reach only if my child imitated her and labelled the object. My child learnt to ask for the things she want by labelling the object. It took her 12 lessons to master the skill and labelled about 25 objects.

    However the speech therapist left the company and I enrolled my child to an early intervention centre that used Floortime. My child was 24 months old at that time. For 2.5 years, my child did not make much progress. The goals such as toilet training, naming more objects, asking for things with a sentence e.g. I want ..., regulate emotions, react to social interaction invitations... were not making even a little bit of progress.

    When my child was 5 years old, I transferred her to an ABA clinic. In 3 months time, my child was toilet trained and she used the sentence "I want..." to ask for things that she want.

    In Singapore, IQ assessments are conducted for all children with autism. My child has fewere than 50.

    There was a very long period of time (from 1 year old to 5 years old) , I wonder if my child would ever tell me what she likes and waht she dislikes; whether she will enjoy her life; whether she will interact with me at all. But now, she tells me what she wants. She can calm down when I tell her that she should not yell and shout (because she does not get what she asks for). She understands and she trusts me that when I said no, I mean maybe later, or maybe I am teaching her a new skill.

    I am now taking an online master degree course of ABA with emphasis in Autism. I can understand the principles of ABA and I use it when we play in the playground; study on the writing desk; do art and craft on the table and bake pizza in the kitchen...

    I shower my affection with my daughter all the time, but when she is doing something bad e.g. spilling water when she is angry, I reacted in an extremely quiet and calm way that is different from what I am supposed to be (smiling and speaking gently). This is the differential reinforcement procedure that ABA use. Reinforce your child's good behavior but withhold the reinforcement when your child misbehave.

    I suggest you to consider the following factors:
    1. if you child is very young, use ABA for at least first 2 years, then consider something else e.g. Floortime. At least to help your child to be toilet trained and gain some vocabularies.
    2. If your child have severe behavior problems and those problems are occuring very frequently and also very similarly, then use ABA first.
    3. If you are very mindful of how your money is spent, go for ABA. At least they give you a concrete goal and draw a graph to show you whether this goal is reached or not reached. When I was with Floortime clinic for 2.5 years, I received hand writing report that is like a fiction. They described how my child learnt and what great thing she did which never happen at home. I can never evaluate if the program is successful of not. Especially the Occupational Therapist, he was wasting time. He has a master degree but he was not doing anything except kept putting my child on a swing to swing her.
    4.If you decide to be the front time therapist with your child, then choose an ABA clinic that provide on-site parent training.

    I hope that you will find your way eventually!

    1. Many thanks for this. You mentioned Singapore in your post so I assume you're currently here as well; can you please provide the name of the ABA clinic you're using? My 3 year old son was diagnosed with HFA and I'm considering floortime and/or ABA as well.


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