Therapy for kids with Autism - worth it?

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This questions is specifically for the members here who are on the spectrum. I'm so curious of your thoughts. As a parent of a young boy with Autism, I hear so much about the importance of early intervention. My husband and I have spent thousands - over $14 thousand - since my son was diagnosed 2.5 years ago on therapy. Speech, OT, Psychology, plus Paediatrician appointments. We have really pulled it back in the last few months, but have started with a new Speech therapist. There's sooooo many rules that we have to follow and place on our son (in addition to your average parenting). What I wonder is - for those of you on the spectrum - did you have this therapy, do you remember your parents putting it into place, do you think it helped...or hindered...?

I wasn't diagnosed until I was 57yo, so training didn't happen. But Mom saw something was wrong and lumped her own version of training (she knew not for what) into teaching me to be a 'lady' as a grew up. She taught me to act Normal and when to do it. She taught me everything - how to stand, sit, speak. I was lucky with a Mom like that.

Eventually I discovered my little 3yo niece was Dx'd with Asperger's. Her mother signed up for all the training available and the two of them worked hard on everything she could find. My little niece is 35yo now, has a degree, a permanent job, friends, and she's charming. When she was growing up, her mother was nearby at all times, teaching. When the child became a Brownie, her mom became a Brownie leader and they went to camp together.

So - any kind of training is worth it. I wish it was free.

IMO please continue with Therapy. It becomes much more difficult as the kids age.

I can't speak to therapies as a child, as I was diagnosed last year at 44. As a parent of two boys who are also on the spectrum I can offer you this...

I know what difficulties have been in life, anxiety, depression, alcoholism, a life time of wondering where the people that thought like me and saw the world like me were. I wish I had the various therapies available to me. As for my two boys, they are both in various therapies (Feeding, Speech, OT, Psychologist) and as a parent I will continue to support those therapies for as long as I am able and as long as they are needed. What makes it worth it in the moment, is that I know that I am giving them the best chance to build a solid framework in which to move through their lives in the present and into the future. Because without it, I suspect that the lack of understanding and working coping mechanisims will lead to a lot of the co-morbids that I have endured. I don't ever want to look back on these earlier years and say "man, I wish I would have stuck this out a little longer" or "what if we would have stayed in that social skills group for another 6 months"

I think in the early years (3-8) a lot of kids are similar. But for kids with ASD their peers will soon break away and their challenges rooted in ASD will only become more noticeable. So I look at these therapies now as a way to hopefully minimize the impact at this level, so that we can continue to work with them so the next shift will be less impactful, and so on into adult transition.

Kind Regards Shark

You may be surprised to hear this, but the program of therapies being offered to your child hasn't been really been practiced long and extensively enough for you to find many adults who went through it. The good therapies come from the things families were trying when my son (now 20) was young and are based in what was found most successful. Things that were experiments in my son's IEP are now protocol. The whole area of ASD treatment has been THAT much of an evolution.

We were lucky that often on pure instinct alone the team working with my son got 80% of it right on the money. There are a few things today's kids are getting that he did not and never will, but surprisingly little given how blind we were flying. My son's ASD isn't that severe, which did give us more flexibility, but you would be surprised how far a little knowledge and a lot of instinct can take you.

What I want to say to you is that while, yes, intervention should be worth it, it also shouldn't be coming across as a long list of rules to remember. We always knew when we had it right with my son; instinct told us so. I didn't have to remember to let him stim; as soon as I had learned the purpose of stims, I could see how they calmed them. I didn't have to remember to keep him from noisy places; I could see him stiffen up and grow anxious in them. So what I want you to do is think less about the protocols, useful as they are, and more about what you see in your child. He should be your primary guide. The protocols are a first step, kind of like a dictionary, but once you speak the language you shouldn't have to constantly consult them; let the process be more intuitive. Not to mention, seeing this all too much as an prescribed exercise will keep you from enjoying special time with your son, and he needs that more than he needs the perfect therapy parent.

For my son, speech therapy proved to be the most useful, along with OT for his severe disgraphia. If you feel the interventions are too much, that the resources they consume (money and, more importantly, TIME) are too heavy related to the benefits, cut back. Temple Gradin's parents never had professional interventions; her mom followed her instincts and helped her child on her own. If you are paying attention to your child, you should be able to find the right balance.

One of the most important pieces of advice I got when we first started to suspect something was up with our son was "pay attention to your child." People had started to suggest OT to us when my son was 4 (before his ASD diagnosis), and our pediatrician dismissed the idea because he didn't think the therapy could do anything I wasn't already doing on my own. His mantra was "pay attention to your child" and act accordingly. In many ways, he was right. I certainly needed hints and suggestions through out the process to get me to see things from a new angle (forums like this were amazing for that!), but taking the time to get on my child's level was essential. I worry that sometimes parents get so obsessed with the rules and the schedule and appointments that there is no time left to pay attention to the child and figure out what he is, in his unique way, telling you.

With this, as with many things in life, you are looking for the balance that works best for your unique family.

As someone who went through multiple therapists, when I was between 11 and 16, I can safely say that most, if not all, therapy out there is garbage. At least when it comes to helping aspies. So I say, put your kids into social skills training (NOT fine dining etiquette courses), have them practice individual sports, make them read necessary books or websites, get them 501/IEP, obtain prescription meds for them, etc. Anything but therapy!

One therapist sent me into a two-week severe depression, when I was crying for days non-stop, and all I had to help me cope was video games. Another drove me to abuse alcohol. I snuck it from my parents' liquor cabinet, and replaced it with water. (Oldest trick in the book. ) All because the therapist was being very emotionally invasive, while refusing to refer me to someone who could prescribe antidepressants. In the end, a shot of whiskey lifted me out of depression like a rescue helicopter, at least briefly; something all my therapists failed to do. This pushed me into alcohol-seeking behavior for years. In high school, I used to buy cooking wine from the Italian aisle (which had no age restrictions) and swig it alone in my room. It tasted vile (because it's for making pasta sauces, not drinking), but I feasted like fallen soldiers in the Valhalla.

All that could have been avoided, if only my therapist would simply not badger me about my feelings, and at least try to get me antidepressants. A good medication could have done wonders for me. As well as kept me from developing a fetish-like fascination with alcohol, that took me years to get over. Although in retrospect, the alcohol could have been just youthful rebellion, as in: "You push me, I'll push back or find a way around."

I haven't had much luck with therapies for my son. It's not that any of it was necessarily *harmful* (as was the experience of the previous poster), but it didn't do much to help my kid feel better, and was an ENORMOUS amount of money for something that did so little. For me, it was pretty clear when I knew certain therapies were no longer worth the time/commitment/expense-- they were more like very expensive babysitting than anything else.

Sometimes it takes a while to realize "you know, I don't really think this is doing much for him," and sometimes I don't even realize how much that's true until after the fact.

I actually think the most valuable thing my son (who is 10) has gotten from any of the therapies we've tried is just the general sense that it's a good idea for him to take some of these issues seriously as things we need to work on (especially stuff like his OCD, which makes him miserable.) And having a DOCTOR who takes it seriously helps to validate that these problems he's having are not because he's a "bad kid" (which was not always the case at school, where he was frequently punished for failing to live up to expectations.) But, in my experience, it's very hard to find someone who is ACTUALLY HELPING, vs. taking your money and giving you the feeling that you're "working on it" when in fact not a lot is really happening. And there is no end to people who are happily willing to sell you their services in that regard.

I think if you can afford the therapies and they aren't doing any HARM, and your kid doesn't hate going, then why not see where it goes? I think the main thing is that SOMEONE be actively supporting him, even if ultimately that person winds up being you. I think a lot of we really active parents tend to take bits and pieces from the various approaches we are exposed to, and cobble together our own custom "therapy" that works best for our child.

Ditto that - I grew up in the 60s and 70s before parents had any clue there was such a thing as autism. They were very aware early on that I was not normal, but had no map whatsoever as to how to deal with it. I do remember that they were very intensive on basic social behaviors (we were regular churchgoers, so there was lots of opportunity to practice). Of course, growing up in the South, all kids were thoroughly drilled on their "Yes, Sirs," and "No, Ma'ams," but I remember specifically being given repeated instruction on things like eye contact and hand shaking. They never were successful at getting me to keep my hands out of my pockets, though - it was (and still is) a part of my most common stim.

On the other hand, more subtle attempts at behavioral modification were pure wasted effort. Play dates were arranged, that ended with me playing alone at another kid's house; my mom became a Cub Scout den mother and arranged elaborate activities, which the group enjoyed, while I read the scout manual in the corner; I was forced to join a Little League team, where I was continually humiliated and consigned to Left Field. I was happiest taking trips to the library and reading alone in my room.

Some things cannot be changed, and attempting to force a child to be something they are not, will only destroy their self esteem and convince them they are a worthless freak of nature. There is nothing wrong with what we are. Be careful that you don't overcompensate and send the wrong message. Behavioral Therapies can easily become psychological torture.

You can't expect the therapists to be objective--they get paid more if they have more billable hours.

This, tempered with what Will@rd said.

I grew up in West Virginia in the '80s (which is kind of like saying I grew up in the '60s and '70s, but different). There was no diagnosis and no therapy to get.

There WAS a father who I'm pretty sure grew up with it, and a grandmother who, according to some stories that have come out since her death, had already pretty much pulled a Temple Grandin (in the sense of turning a profoundly autistic child into a very high-functioning autistic adult) a generation before with her inherited daughter (she would haunt me if I used a word like "stepchild").

They taught me how to function in society (how to do things like be polite, deal with small talk, handle a transaction with a cashier) and how to function with my brain (compensate for things like executive function or frustration tolerance). They did some kind of rudimentary ABA I guess, without the Skinner's Rats conditioning elements-- to logically think, to a certain extent anyway, "If I do X behavior, the consequences of that are likely to be Y."

They didn't try to "make me approximate a normal kid." They didn't know they needed to-- like I said, no diagnosis existed, so they assumed I was, clinically speaking anyway, a normal kid and would turn out OK when I outgrew being "sensitive and backward".

For the most part, they were right. It worked. I still have some issues with executive function and frustration tolerance. The executive function issues usually result from failing to use the systems that I know work (like paying bills as soon as they come in, before they're out of sight and out of mind in the mail holder). The frustration tolerance issues basically mean that I cuss a lot, venting frustration instead of JUST NOT GETTING FRUSTRATED IN THE FIRST PLACE. As far as I can tell, other than maybe learning some alternative swear words that aren't offensive to Christians and "civilized types," that's as good as it gets.

The biggest issues in my adult life revolve more around depression, anxiety, and burnout from trying way too hard to force myself to try to approximate a neurotypical (which is a result of, frankly, bad therapy). Not so much around autism itself.

The best way I know to put it is (and I can only speak for the "high-functioning" end of the spectrum, because that's what I have personally experienced) to say that teaching the child to optimize their functioning as an autistic is worth the time and trouble. Trying to teach the child to "become not autistic" is not. With a very high-functioning child, you might actually succeed (on the surface anyway). But it's not worth the price both you and they are going to pay in stress and resentment now, and they price they are going to pay in mental illness and burnout later.

They ARE autistic. They are always going to be autistic. They are going to think differently, function differently, have to accomplish some things differently, have more trouble with some things, have to let some things go, and have trouble all their lives no matter how "normal" they become with people who are perfectionistic, mean, or hell-bent on the idea that there is only one right way to "Be Human."

Well said.

Better to pay for it when they're young than pay for it later. I wish diagnosed when I was like 14/15 and did some basic talk therapy but the damage was already done as far as the emotional issues/co-morbids I developed. It's something I'm just starting to dig my way out of, I so wish I was 10 years younger. Obviously you don't want to waste money and shouldn't if the kid isn't getting anything out of it or the therapist is bad. There really wasn't any specific therapies or accommodations available to me, I was basically left to isolate myself for years. I'm not that old but I feel like things have probably gotten a lot better over the course of the last 10 years.

I wanted to add something after reading the response above this one, where it's advised to get help sooner rather than later, if you can afford it. I agree that's sound advice. Even though I've tried a lot of various therapies and at this point am happier to do things for my son on our own, I do think it's really useful if *somebody* is working actively with a kid to help guide him or her on things which may not be obvious to them or that are confusing or distressing. Both my brother and I are un-dx Aspie, but he had more problematic social issues than I did (stuff like, feeling compelled to "correct" people who clearly do not want his advice, and then feeling hurt when they judge him a JERK.) I mean, I do that stuff as well, but not to the degree that he did growing up. Anyway, it's been interesting to watch as he has gradually figured out all that stuff on his own, through tons and tons of negative feedback and hard life lessons. It took him about 30-40 years to really absorb the lessons all by himself, and modify his way of interacting with people in order to avoid unintended negative consequences.

My son is VERY similar to him, and so I take a very proactive approach to this stuff, trying to ACTIVELY teach him these same lessons that my brother would have benefitted from (I'm talking basic stuff like, "if people want your advice, they'll ask for it," or, "spending the first 50 min of a 60-min play session creating dictatorial rules is not fun for anyone else") and helping him sort of "debrief" social interactions that didn't go well or had unexpected outcomes. My brother, I think, would have benefitted enormously from that kind of guidance when he was a kid. Instead he spent a lot of time alone, with hurt feelings. YES he figured out a lot of this stuff, but it took a lot, lot longer. Decades. I think this is the kind of stuff that a lot of Aspies would benefit from as kids, and (I think) it doesn't really matter who is doing it (a paid therapist, a parent, another relative on the spectrum) so long as the person knows what they are doing and truly "gets" the kid they are working with, and presents the information in way that doesn't offend the kid (so much stuff for kids is so condescending that it's just a big turn-off for everyone).

I am afraid that there is a deeper issue than his communication skills. See, the thing about autism is we focus too much on comparing ourselves to the neurotypical people. The end result is no one is happy. Instead of focusing on behavioral issues, we should open our eyes into a much bigger issue: underdevelopment. See, do you think it should take 30~40 years for someone to "really absorb the lessons"? When something hasn't worked for 30~40 years, isn't it time to take a step back, and ask ourselves: aren't we missing something? Could it be that we have gotten it all wrong? Blaming the victim is not the way to go.

Take a look at: http://www.eikonabridge.com/AMoRe.pdf

Keeping pounding on the dry spots is not the way to develop an autistic child/person. You can't get something out of nothing. Sadly, that's what our entire society has been doing. People cannot take their eyesight away from the "problems" of autistic people, while neglecting 100% to develop from their interests/strength. You've gotta connect the two worlds, and the starting point should never be a dry spot: it needs to be a wet spot. Ask yourself: did anyone talk to your brother when he was 2~3 years old, through pictures and writing, everyday, every night? Intellectual development has nothing to do with (a) having eye contact, (b) being able to talk, (c) being social, (d) ridding of sensory problems, (e) ridding of behavioral problems. Don't believe me? Why don't you look up Hellen Keller? So whenever people tell me about the importance of social skills, I chuckle. Nope, we've got it all wrong, Ma'am. The white elephant in the room (underdevelopment) is there... we just refuse to acknowledge its presence. You can't sweep a white elephant under the rug.

See, the world is big enough. I used to have the view that one should fit in. But as I grow older and wiser, the more I realize that that is not the right way to go. Instead of fitting yourself into people that are clearly not at your level, what you need to do is instead elevate yourself to the next level. You don't do that by being social. You do that by developing your skills. The world is big enough, you get to choose who you want to hang around with. I look at the lives of most neurotypical people, and I simply can't say they are happier than I am. I look at the lives of autistic children from parents that chase everyday after social skills, and I can't say their children are more social, or happier than mine. So many parents start chasing after social skills for their 3-4 year-old children. After these children turn into their 20s or 30s, many of these parents are still chasing after the same thing. I mean, when will people wake up and realize that that's not the way to go? When will people wake up and realize that they've wasted and ruined their children's lives?

My point is: let go all the craze about social skills, behavioral issues, sensory issues, eye contact issues, and even verbal skill issues. None of those issues deserves any of our attention. Those issues simply reflect children being children. There is nothing to do there. What parents/educators need to do instead is to develop the children from the visual-manual direction, and develop them from their interests. See, you can't blame the children when you cannot even pick a pen and draw pictures for your children. That's my point. The children are fine. The adults are the ones with all the mental health issues. When adults cannot even pick up a pen and draw pictures, that's a mental health issue. Why? Because when the adults themselves were kindergarteners, they were perfectly capable of picking a pen and draw. Moreover, back then they were full of creativity, and could learn anything in a snap. Adults really ought to look themselves in the mirror, and realize that, after all, they are the ones that are intellectually disabled and with behavioral problems. Without solving the issues with the adults, it's hopeless to expect children to properly develop in that kind of toxic environment... where adults focus on social/behavioral issues, to hide their own lack of intellectual skills.

I was born premature and an aspie. My mom had me in all kinds of therapy, some of which I only recently learned was therapy.
Like how my sister and I had this game involving an exercise ball, where we would roll it around as fast as we could while wrestling each other. The first one to take their hands off lost. Turns out that part of my PT was using an exercise ball to balance while I learned to walk, years before I added, or was even capable, of the wrestling part.
So, generally, therapy helped.

Therapy is most effective when you don't know it's therapy.

I beg to differ!

I, too, was put through therapy that I didn't know was therapy. I found myself sitting in front of an eccentric lady who grilled me about feelings. She'd ask how something made me feel, then turn around and say: "No, that's not what you felt; try again." She'd also force me to talk about my bullying experiences, leaving me feeling depressed the rest of that day and the next day. Another therapist, the sorry excuse for a human being that she is, forced me into a two-week depression. She was testing me for ADD; she pretty much set me up to fail, and there was nothing I could do about it. As a result of all those therapy experiences, I started abusing alcohol at age 12.

In the end, the only thing therapy taught me is lying skills. Because the only way she believed my answers about feelings was when I told her blatant lies. Strangely enough, she thanked me for my honesty. SMH!