Therapies? Help or Harm?

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Hello everyone! First and foremost, I want to say I am so happy to have found this site.

I am the mother to a 10 yo Aspie w/ ADHD and Anxiety. We have chosen to homeschool and have private therapy. School was a major disaster. Not because the kid is not brilliant, but as many of you know the social, emotional drama and the misunderstanding of everyone involved including the so called "educators".
Anywho, I am happy with our homeschooling journey but struggle with what "therapy" to pursue.
I do not wish to change my son. I love his personality but just wish to ensure he has all the necessary skills in order to succeed in whatever he chooses to do.
He is an only child and is extremely solitary. He has what I call "Post Traumatic School Disorder" which has caused him to fear new people especially kids. I want him to join clubs about the things he is interested in and have his own group of quirky friends.

So, here's my question. What therapies, tips, tricks, books have been most helpful to you (Aspies and Autistics). Parents: what has been most helpful to helping your child gain social skills and build confidence? There are so many therapies out there. It can be daunting and I refuse to pursue dead-end routes... hopefully.

Thanks in advance.

I think that the biggest surprise to me was how much my out-going, talkative, and large vocabulary son needed speech therapy. Most people with ASD have large deficits in pragmatic speech, which is basically the ability to engage in EFFECTIVE communication, that gets to the point and achieve your goals. Over the years, in speech therapy, my son also worked on symbolism, expressions, appropriate exchange/reciprocal communication, and reading/responding to body language. I consider speech a must have therapy for ASD. People training in speech are spending large amounts of time learning about the issues involved with ASD and seem to be at the forefront of helping improve life in a practical, useful way.

Be aware that speech is something a child is likely to move in and out of, achieving the goals appropriate for his age and "graduating," but as the bar gets raised down the road being ready to learn more advanced skills.

We also did many years of OT, but outside the year where he learned to type, the progress made through that was not obvious or tangible, so for us it is hard to gauge how crucial it was. Most people, however, consider OT to be another extremely important therapy.

How important basic psychotherapy will be for your child depends on how well he manages his emotions, what types of internal conflicts he experiences, what types of co-morbids he has, how comfortable he is talking about things that bother him to family, etc. My son did a very useful group program focused on anger management and self-control when he was in 4th grade, the timing was just perfect for him, but otherwise we haven't done much with psychotherapy and don't really miss it. Meeting with a psychologist was written into his original IEPs but the school psychologist was so impacted he barely ever saw her, and since he's a pretty happy kid who has a good self of self, we ended up feeling this really wasn't something he needed. Except for that 4th grade year, and that was through a non-profit outside of school (recommended by the school at our request).

My son is considered very high functioning so that about covers all that we've done or considered.

Quite a few people have had positive experiences with CBT (? I think the name is cognitive behavioral therapy) and some children do well on special diets, which can address difficult to identify food sensitivities. We have whole threads on when to consider those, if you look at the parenting index, above.

Be careful of some of the other things you will hear recommended, because there is a lot of snake oil out there.

As far as activities go, have your son help choose. My son really loves Scouting, his dad and brother go with him every week and they do a wide variety of activities as a group. Same kids, his age, every week, so he is used to them and they are a part of his weekly routine. Our church ( not everyone's choice) has a great special needs ministry. There is a sensory room available for him, and he is also able to join the NT group when he chooses.
As far as therapies, we are just starting in therapies, but currently our psychologist is recommending speech, OT, and ABA. Our son is very high-functioning Aspie, but has a lot of sensory integration problems, which is why we are doing OT.

Speech therapy and diet are most helpful and seem to be all my son needs.

About PTSD, don't be afraid to take it easy for now. Take care that you don't push too soon. He may need a really good break to heal. I would look for when he becomes interested in activities and seems to want friends. My son does need pushing, but doing it at the wrong time always backfires. With the neighbors, alternates btw several months of seeing the neighbors constantly, and several months of staying home. I take his lead.

Speech therapists very often see the child alone for a while and then have him join a group. We alternate between group and individual sessions. So maybe your son would meet possible friends that way.

If he has any sensory issues, then definitely consider OT.

Also, once the child gets older, OT can begin to work on things like helping the child develop strategies for executive function issues, self-help, and activities of daily living. My HFA son's OT has worked with him on things like looking up names in the phone book, writing grocery lists, making change, how to get through a store efficiently, how to fill out a basic form. When he goes back after our insurance induced break, I'm going to ask for things like practice walking on the side of the road safely. For an Aspie, those basic things might not come up, but activities toward independence do fall under OT for a tween and teen.

m son is homeschooled as well. He has gotten Speech (soon to end) and OT thru the district, he even got social group for a year. He is in a private social group now, and loves it! He is many activities including: karate, swimming, bowling, social group, book club, science club, and he has weekly play dates with friends, goes on homeschool field trips, etc...

I'm not sure what pragmatic speech therapy is as I'm googling it without much luck and none of our local speech therapists have heard of it (says something about this lovely exurban hellhole we live in-- looks like I'm going to be putting a lot of miles on the old minivan, good thing there's lots of other reasons to go to Pittsburgh). But I keep looking it up, because it sounds like something that would have been a real skin-saver for me and something that would definitely do my little boy good.

CBT and/or talk therapy have helped me a lot with my own PTSD issues (which I got from BAD therapy-- so be careful, be extremely leery of any therapist who pushes meds and stresses the can't, won't, will always, will never; basically if you leave therapy feeling hopeless on a regular basis, don't go back).

ABA is not real well though of in the autism community-- especially not by high-functioning autistics, who tend to refer to it as Pet Training Applied to Humans and to consider it more abuse than treatment. I like to quip that I am smarter and higher-functioning than BF Skinner's rats...

...but I also have to note that being mercilessly bullied and thinking about the ways in which the bullies were justified and what I could do to avoid it in the future was probably a crude version of ABA and, however painful it was and however much it was responsible for my later anger, anxiety, and depression, also had a healthy share in being responsible for me ending up as successful and high-functioning as I have despite having grown up before Asperger's was available as a diagnosis back when "autism" was a non-verbal little boy who banged his head on the wall all day.

I'm not recommending that approach. I'm not that hateful anymore. But I do have to acknowledge-- facts before feelings, Aspie to the bone-- that the fact exists.

I don't have any other suggestions off the top of my head...

...but I have dug this thread up out of the graveyard and I'll be back. You may grow to wish I was the type to abandon a discussion, but "perseveration" is definitely one of my personality traits.

You've already done the biggest one -- getting your son out of a horrible (for him) school situation and into a good one.

Otherwise (and this is not going to be a popular answer), for my son the "therapy" that made the most difference was ADHD meds and risperidone. For him we've seen a lot of benefit and very minimal side effects. Two recent experiences confirmed that the medicine makes it a lot easier for him to handle everyday situations. 1) An evening booster of stimulant med before cub scouts made the difference between being able to sit and listen and being so anxious and hyper that he is hiding in cabinets, spinning, and walking across chairs. When questioned, he confirmed he didn't feel the need to move around as much and liked the change. 2) I had a doubt in my mind whether the last risperidone increase (done a year ago before the sh#t hit the fan at public school) made any difference, so when things had been calm for six months we decided to do a trial of reducing the dose. The last two weeks have seen a huge upswing in problems at home and at school, with him getting mentally "stuck" in a way I haven't seen in a long time. Note that I'm not claiming the meds solve all the problems -- he was very aggressive with extreme behavior in general ed even with meds -- but for him they make it easier to function when the environment is good (home and his new school).

His school is run by an ABA therapy group, but it's not the discrete-trial type ABA that you usually think of. Instead, the focus is on analyzingAntecedent, Behavior, Consequence -- basically doing a lot of observation and thinking to figure out what environmental things to change, what skills to teach, and planning out how to respond to problem behavior.

I think a social skills or social communication based on the Marcia Garcia Winner Social Thinking curriculum is very worthwhile, although I can't yet point to concrete results like we've seen from medication.

Hey-- if it works, it works. Everybody's different-- if it passes Ye Olde Cost-Benefit Analysis, it passes. I'm sure you're not weighing the costs and benefits lightly-- I've cyber-known you too long to believe that.

I think the thing that infuriates me about things like antipsychotics isn't that they're used-- because I know darn good and well that they work for some people. For some people, they remediate the problems without destroying the person (and without major side effects). Prozac saved my fanny-- Prozac also gave my best NT female friend a real bad time.

So it's not that they're used. It's that there are all too many people out there who use them indiscriminately, with more regard for the suppression of symptoms than for the well-being of the PEOPLE they're treating. That, not only in my own case it seems, the answer to "this drug isn't helping, it's making things worse" is to up the dose until the patient loses the ability to complain.

If it works, though-- I've cyber-known you for far too long to imagine you letting something like that happen to your kid. Me-- well, I let it happen to myself and, sadly, I can still see me forcing myself to allow it to happen to my kid, too. So I issue the caution I do to everyone else.

If it works for you, it works for you. I do all kinds of stuff-- like thinking things through over and over and over until I know I have the answers-- that other people swear would drive them more nutser. It works for me. If it works for you, it works for you.

Hi I am new here and still learning a lot. I don't know how much I will have to offer. My son is only 5 and in kindergarten but your post drew my attention. My son is also an only child. I struggle also with what therapies and how much is too much. I don't want to change who he is either or his personality. Some of his quirks, although maybe seem odd or weird to other people, make him who he is. Currently we only do speech and OT. My son has a lot of sensory issues. The problem for us is we pay out of pocket and both therapies are over an hour away. It makes for a long day for my son during the school year (it tacks about 3 hours on to his school day with the drive time). He dreads when he knows he has to go, and often times isn't cooperative because he is tired from school. I feel like some sessions I am throwing away money, and money that I could surely use in other areas. Sometimes, I feel like it's just too much and too many people telling me their opinion. It gets overwhelming. Just recently, his OT was trying to inquire about my parenting and disciplining at home with some of his behaviors. Although I know he is trying to be helpful, it seemed a bit intrusive...maybe I am just a sensitive parent. It rubbed me the wrong way. I have avoided behavioral therapy for that reason.

I do have a comment on medications. I will try not to write too much because this is a topic that I am sure could draw strong opinions and I don't want to offend anyone. I am a pharmacist. I get a sick feeling every day as the medications are flying out of the pharmacy, often times to very young children. I believe our society has become one that wants a quick fix for everything. I believe many people go to the doctor and don't ask questions, and just take that piece of paper to the pharmacy and say "my doctor said to take this, so here I am to get it". I don't believe everyone does this and I respect the people that do their own research, ask me a lot of questions about their medications, are hesitant to just put a chemical in their/their child's body without knowing there could be consequences, and make educated decisions after analyzing the risks and benefits. Often times, whatever we are treating, a medication can be the answer and can have dramatic, life changing results. For me, maybe it is all of my knowledge about the medications or maybe it's a disgust with the overuse of medications in our society, but it would take a lot for me to ever put my son on medications (and it has already been recommended which is crazy because I don't think my son has severe behaviors).

I'm going to have to read up on the differences between discrete-trial training and what we'll refer to as "intelligent" ABA.

I know the half-assed attempt at ABA that was practiced with me as an adult produced a very polite, very soft-spoken, very well-mannered, very nice and appropriate and well-behaved completely and totally helpless doormat with "VICTIM" written all over her who had no desire to live or reason to have any.

That was definitely discrete-trial training. It existed in a theoretical vacuum, was founded on the principle that all other people are decent and there is no one out who will manipulate the rules to their own advantage or try to harm you and take advantage of you just because they can (I still have trouble believing I was stupidly compliant enough to accept that!! !), and decidedly did nothing to improve my functioning, my life, or the life of anyone around me (except those who wanted a well-mannered yes-woman). In those days, I couldn't even have posted here. I couldn't have spoken up for myself if I tried; I couldn't have given myself permission to make the attempt. Yeah-- spitting flaming sulpherous death on that crap.

On the subject of therapies and medicaitions...

I think LizaLou74 just spoke volumes. Most of us here are pretty educated. Meek little followers who will do whatever anyone promises them will work typically do not end up on message boards talking to other parents about what works, what doesn't, and what they're doing-- at least not until something clicks and they get smacked over the head with the Wake Up And Be An Active Participant Stick. There are no meek little followers here-- and you would probably have to be a pharmacist or a doctor or otherwise "in the know" to see them, because meek little followers are generally close to invisible.

So the advice for what works and what doesn't, then, goes something like this:

Nobody knows, for sure, what will work and what will not in your particular case. Finding what works is going to be an involved process of trial and error. So what you need to do is START. Read, research, think about your particular situation. Then pick a place and start the trial. Be alert for error. When you find something that works, use it. When you find something that doesn't work, stop using it. Be doubly alert for harm. When you find something that is harmful, STOP USING IT THE MOMENT YOU REALIZE IT IS HARMFUL. If you find someone who won't listen and wants you to be a meek little follower, don't see them again. Try, and err, and above all, keep one eye on the road, the other eye on the dashboard, and both hands on the wheel.

BuyerBeware, I hope you do not mind me asking this but I am surprised that they do discrete trial ABA with adults: Is it the same as what they do with kids? What did it entail?

Edited to add: I have always been concerned about the priority put on compliance and how they do not like teaching exceptions that muddy the waters. My son has a history of non-compliance and so that it what the school tried to drum into him. I am not at all arguing that my son is "well-behaved" in a traditional sense, but I was really alarmed at how they would teach a child to be compliant all the time without mentioning the obvious exceptions: stranger danger, abuse, sneaky little bullies etc. I always included those exceptions in my social stories and always wrote something in there about not complying if something felt unsafe or is not the right thing to do.

I was always very straight forward with the school that I did not like them leaving these things out b/c autistic children are especially vulnerable, if for no other reason than their rule-following and poor communication. I corrected them anytime I heard that they did this, and I expressly made sure to let my son know about these exceptions. It is not even on their radar--even with the good teachers. His "good teacher" even wanted me to know I should not to put too much emphasis on these basic safety issues in favor of compliance.

Yeah, it makes things harder when you try to teach nuance to an Aspie/HFA but in my mind my son was not non-compliant so much as not understanding when to comply and when not to. You don't solve the problem by telling him to always comply. It may make it easier for them but it is not teaching him what he is supposed to do.

I think they stress compliance because compliance is easy, compliance is visible, and in the main compliance is going to make their day easier, their classroom run smoother, and make it more possible for them to do the job they were hired for: give the child in question an academic education.

Compliance works in the environment they're thinking about: the simple and straighforward and highly structured environment of a classroom, where the teacher is teaching, the students are listening, and the vast majority of people follow the nice polite rules the vast majority of the time.

The problem with compliance is what you see: That environment mostly only exists in theory. Even in said structured classroom setting, there are all kinds of muddy nuances that nobody really wants to deal with, that are a daily judgment call even for the teacher, and are a frank nightmare for an ASD kid.

Nobody really wants to deal with them, so they get ignored...

...and the ASD kid learns to comply with the teacher and comply with the aide (and comply with the bullies and get very upset indeed when s/he gets in trouble for doing it).

This is "Stupid ABA" if you want my opinion. Having no diagnosis, I haven't run up against it with Young Mister Edison yet. I know I'm going to, and I don't know what I'm going to do. Right now I'm running with, "Teach compliance with a really big stick." I hate it, but it kept me out of trouble as a kid...

...and I am going to back that up with turning around and telling the school, "OK. You have your wish. I am teaching him to comply. Now you pay the piper. If I am going to teach him to comply, it becomes YOUR RESPONSIBILITY to protect him from things that will harm him. YOU watch out for Chester the Child Molester. YOU watch out for bullies. YOU WATCH OUT FOR HIM THE WAY YOU WOULD WATCH OUT FOR A TODDLER IN A ROOM FULL OF SIX-YEAR-OLDS. If you don't do that, you will find yourselves dealing with two angry parents and a big mean lawyer."

That was basically the treatment I got from an idiot in Arkansas and an idiot in West Virginia. It all proceeded from the assumption that I was completely defective, that anything I believed was wrong, and that any success I had had in life up to that point was either a coincidence or through someone else's effort. It involved me and the therapist sitting on chairs in a little office, maintaining eye contact and keeping our hands folded in our laps, having polite interactions where we both made sure to follow the rules of How People Are Supposed to Talk To Each Other.

I was good at it and got praised regularly for being so high-functioning (she really went wild the day I didn't have a sitter and got down on the floor and stacked blocks with my then-2-year-old, speaking in one-and-two word sentence fragments 'cause that was about all I had left by then-- sheesh, you would've thought I'd saved the kid from a burning building or something)-- and that praise is probably what kept me coming back for so long.

The problem was two-fold.

1) I already knew how to deal with people who wanted to make small talk, I already knew how to have a polite conversation and follow the rules, I already knew how to converse with someone who had those wonderful good intentions that we want to think everyone has. I had been able to say "Yes, please" and "No, thank you" and "Have a nice day!" since I was a preschooler, and I'd more or less taught myself the rules of casual interaction and small talk in my 20's. I learned to shoot the bull living with Saint Alan-- Saint Alan was one of the all-tiime great bull-shooters. That's what we did all evening-- eat dinner and watch TV and, after I turned 18, drink wine and smoke dope and shoot the bull.

2) What I didn't know how to do was deal with hostile interactions. Angry people, inconsiderate people, unhelpful people, people with ill intent. That's what I was there to learn. I realize everyone struggles with this, but. This idiot's response to that was, "Those people don't exist. If they're angry, it's because you made them angry by failing to follow the rules I'm trying to teach you. If they're inconsiderate or unhelpful, it's because you are failing to follow the rules that I am teaching you. There are no people with ill intent." If I tried to argue, I was a) paranoid and in need of more Risperdal, b) delusional and in need of more Risperdal, or c) perseverating and in need of more Risperdal, or d) combative and argumentative and in need of more Risperdal.

We all know how this story ended.

These people should lose their license to practice therapy. The director of this clinic was recently (very recently) caught in a big old net along with several other doctors and psychiatrists and one unscrupulous lawyer (who did-- guess what-- litigate disability cases) and charged with disability fraud to the tune of $2.5 billion. Apparently a claims processor in Huntington noticed that a lot of people were filing total disability claims for relatively minor conditions (Asperger's, ADHD, depression, anxiety), that all of them were coming from Central West Virginia in the vicinity of the I-79 corridor between Fairmont and Charleston, and started connecting the dots...

This kind of ABA works...

...for moderately to profoundly affected people who will, in all likelihood, be spending the rest of their lives living with family, in an institution or group home, or in sheltered independent housing. It works for people who are going to work in a sheltered workshop and socialize in a sheltered setting and spend the rest of their lives with therapists and assisstants and other people to protect them from the occasional predator (and, we hope, rescue them if, God forbid, the predator turns out to be one of the people that are supposed to be protecting them). It teaches them to be polite and pleasant and docile, and it provides the lubrication that makes a setting like that work more smoothly for everyone, staff and clients alike.

It does not work for the (still largely undiagnosed) other half of us, who will not qualify for that kind of living arrangement (and probably would not accept it if our society could fund that kind of thing). Thus we have the quandary of the high-functioning NaT (neurologically atypical-- ASD, ADHD, GAD, MDD, now-adult pediatric stroke patient, mildly intellectually impaired, stick a spoon in a bowl of alphabet soup and see what you pull out).

It also fails the first group when the system sheltering them a) dies, b) ages into infirmity, c) gets defunded, d) runs out of funding, e) gets shut down, f) is overloaded, g) sufferes the inevitable oopsie, h) catastrophically breaks down, or i) otherwise fails in some significant way.

BuyerBeware,

That is beyond irresponsible that they would teach people that. I can't imagine it. I can see why people are afraid of getting their kids diagnosed. If they would pull that nonsense on an adult...I would be afraid of what the unscrupulous would do with a child.