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I'm curious about what happened over time - 6 months later, a year later. Did the kids regress when no longer receiving the stimulation, or did the results stick? I'd be interested to see long term results compared to other kinds of therapies.

 

We have access to sensory based therapies and sensory activities here and I feel like the results have been questionable for us. It seems to sometimes take the edge off in the very short term, then disappear, which makes it more of a management tool than a therapy for us (not that there's anything wrong with having tools in the tool box.)

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I hate it to no end when sports play in the background. You have the people who are announcing for the sport yelling in to the microphone and then even though they are in a sound booth, they seem to have the sound of the crowd being loud coming in to the sound booth and being a part of the broadcast. I only assume it is about ambience. But it is awful to me. You are not there, at the game, but you have to listen to men screaming in to a microphone to talk about the game and what sounds like a loud static piercing through, the static being the ambience of the crowd. I hate it to no end.

 

And it makes me start to feel angry too. One day, I was cooking dinner while watching a calm TV show. But the baby needed to be breastfed. So I asked husband to come in and help with the dinner so I could nurse the baby. He didn't want to help, but came anyway. And he immediately changed the channel on my TV to yet another football game. I was sitting there, right in front of the TV, watching my show, and he picks up the remote and turns to that offensive thing. I hated it. It felt like my skin was crawling. I asked him why he did that, I was watching a show. He said if he has to cook, he gets to pick the show. Forget the fact that when I was cooking, he was playing on the computer (not working, playing) and the only reason he was cooking now was that I was breastfeeding. 

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Mom of 2 boys, without specifics I cannot speak to the therapies and activities in your area. I'll just explain a few things in general, taking into account my own experience with sensory issues and my research. I think that sometimes people confuse sensory play with therapy. We do tons of sensory activities and those feed the need (the seeker). They are just play. Not therapy. They can be calming at the time that the activity takes place. That is not what sensory integration therapy seeks to do, though.

 

This might help you understand it more:

 

https://www.understood.org/en/learning-attention-issues/treatments-approaches/alternative-therapies/sensory-integration-therapy-what-you-need-to-know

 

Another good source can be found here. You can also find supporting evidence in the references at the end of this article. 

 

Where I live, sensory integration therapy is done by OTs with degrees in occupational therapy and some with postgraduate studies. They have specific training in sensory integration therapy. Sensory integration therapy has quite a few studies backing it from what I have seen. I'll link some, although I have not read through all of them yet. 

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3708964/

 

https://www.autismspeaks.org/science/science-news/study-finds-sensory-integration-therapy-benefits-children-autism

 

Here's one for ADHD:

 

EFFECT OF SENSORY INTEGRATION THERAPY AND COGNITIVE BEHAVIORAL THERAPY ON ATTENTION DEFICIT HYPERACTIVITY DISORDER: SINGLE BLINDED STUDY

 

What is so unique and a big deal about the one I linked in my initial post is that is seeks to combine the sensations from various stimuli at the same time. That is huge for us because this is an issue we deal with in our home. We do not have severe sensory issues but we do have enough that affects our life in various ways. I found ways to cope in my life but with time and other life factors the level of tolerance is often affected. My husband has some also but much milder than the rest of the family, which is why he had never noticed them. I have always known about them because they run in my family (from my mother's side) and were always considered quirks. 

 

Sensory issues have been added to the DSM-V diagnostic criteria for autism . They were not there in the DSM-IV.  

 

A quote from Temple Grandin's book, Temple Talks about Autism and Sensory Issues:

 

I know what that is like and that is what I saw in my son the other day.

 

Would the results from this therapy be long term? I believe that they could and my reasoning behind it is that they are based on the process of desensitization. Exposure slowly desensitizes certain sensitivities to sensory stimuly. I have tried it. Will it be a cure? No. But these therapies are not seeking to be a cure. The goal is to help reduce the impact certain features of autism (like sensory issues in this case) have on a person's daily functioning. If you read the actual study you will see that the challenge is upped with time. The other big deal about this study's form of therapy is that it can be done at home, administered by a parent, with little to no cost And, actually, they did another more recent one as well, with similar results.

 

Environmental Enrichment as a Therapy for Autism: A Clinical Trial Replication and Extension

 

Thanks for the extensive info! Yes, I know the difference - we had sensory integration therapy with occupational therapists for 4 years straight. This year we attend informal sensory play groups. I'm also autistic, and experience these same kinds of challenges myself as well. I do hope that there can be long term success. It doesn't seem like it's going in that direction for us, but even if it only helps in the short term, that is still a positive thing, so I don't think that anyone can really go wrong here. 

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Mom of 2 boys, are you seeking comparisons between therapies in connection to behavioral problems? Because I will tell you here that you might not be asking the right question. The point should be, what is causing the behaviors. The answer to that will not be the same for each child. Not all behaviors will be connected to sensory issues, even with the same child. So, to me, you need to look at your child(ren) and decide through evaluations performed and personal observation what is the driving force behind the behaviors and then decide what you feel is the best therapy. Sorry, your post was not explicit enough for me to determine what your concerns are so I am just guessing here. 

 

Just autism traits in general, as that is what the study seemed to be comparing (using the ADOS and whatever other tests they mentioned.) 

 

That being said, I haven't had much success with figuring my son out, and neither have the professionals we have dealt with (there have been many.) We're having his IQ tested this week to see if/how that's a factor, I'm getting him set up with theraputic horseback riding this month, and I might try a play therapist who thinks she can help (I've heard this before.) He does have behavior problems, and his self care skills are severely lacking - but he is extremely intelligent, so I just never ever know what to do with him. He's a 5 year old who acts like he's 2 and sounds like he's 9 when you talk to him. 

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 He does have behavior problems, and his self care skills are severely lacking - but he is extremely intelligent, so I just never ever know what to do with him. He's a 5 year old who acts like he's 2 and sounds like he's 9 when you talk to him. 

 

Not to point out the obvious, but if he has a developmental delay of 2-3 years, he has a developmental delay of 2-3 years. Sensory experiences aren't going to "fix" that or solve that. 

 

I'll also point out the irony that to the researchers the improvement was awesome (scores on an ADOS), but to the parents the progress wasn't enough to be worth continuing. Hmm.

 

Fwiw, I find that my ds just plain is where he is developmentally. When I finally had someone do the math and say "not more than 2 years behind" I was finally able to wrap my brain around it and go ok, let's just subtract 2 from everything and move on. And maybe in your world, maybe subtract 3 gets you there, don't know. Just saying in our house, that works. It's not your imagination that his self-help skills could be THAT FAR behind. My ds' are. It's why he qualifies with the county board of disabilities, because he wouldn't be able to make a phone call in an emergency. Like really basic things like that are things they look at, like whether he can make an age-appropriate snack, remember personal care skills, do chores, etc. These are important things they factor in, and you're not crazy saying they're behind! But that's just not realistic to think that doing sensory will somehow make all that poof. He is who he is.

 

Keep taking steps forward. I will say, it's a bit easier to enjoy an 8 yo who has the skills of a 6 yo than it was to enjoy a 5 yo who had the skills of a 2/3 yo. That was crunchy. And with a 99th percentile vocabulary, yes he has been kind of like your ds. But it does get better. We now have enough interventions going and enough EFFECTIVE interventions that my ds is now, finally, pretty charming and pleasant to have around. We just took him out to dinner and an evening with our friends, and no one got hurt. He took over some things, but we redirected. He made good choices and stayed calm. He grabbed some things without asking but allowed the person to take them back without a fuss. So still a lot of social issues for someone of his IQ, but enough chilled that we could take him along and not have it be a stressful evening. That's improvement in our world. 

 

For us, working on retained reflexes has been HUGE. I'll note that some of the sensory input activities there were actually things that would also work on retained reflexes. There's a lot of pigeon-holing in research, and these people don't necessarily know what they're doing. I'm being told there are certain spots where you can do sensory input, like the feet, where it's like powerhouse, as in put it in there and you get SUPER benefit, rather than just the random benefit those researchers were getting. So wouldn't it have been smart if they had used some of that knowledge from other fields of neurology rather than making random, arduous lists that the parents weren't willing to continue and didn't see enough benefit from? ;)

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OhE, I will repeat what I have said many times before, I'm really happy that ABA has helped your son. This thread is about a specific research on sensory based therapy that helped a certain percentage of kids see improvements. Only some kids see improvements with ABA as well. So that is not exactly a cure all either. Also, I believe you know as well as I do that there is no one single form of ABA therapy. Because ABA therapy gets funding from some government health plans and insurance companies many forms of therapy get branded as ABA to be covered.

 

At least sensory integration has studies backing it. Could you show me the studies on autistic kids that showed improvements with retained reflex therapy?

 

Also, which therapy did the parents not continue? Could you please point me to that?

 

As for the skills you are talking about, NT kids are not exactly born knowing them either. We teach these skills and other life skills just like neurotypical kids. It might take a bit longer but eventually it sticks. We have taken my 8 yr old son to restaurants a couple of times recently. We did quite well, but that's not the point. You cannot compare kids with autism based on age and developmental age delay. Each child faces his own unique challenges and sensory issues play an important role for a great number of them.

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DS12 had OT for sensory needs through early intervention when he was two and then later, privately, when he was about 9. I do think he would have benefited more if he had had sessions more often than once a week. Although the OT he had when he was older gave us lists of things to do at home, it was challenging for me to make it happen, with everything else we had going on in our family at the time. When we stopped OT (we were moving), he had an exit evaluation that showed he had made some improvements on the testing, but they were not significant enough to make a noticeable difference in his daily real life.

 

DS and I are not genetically related, as he was adopted, but learning about his sensory needs has made me much more aware of my own. I am the opposite of him -- he is sensory seeking with low registration, and I am hyper sensitive and react defensively to a lot of sensory input. SPD was not a known thing when I was a child, but I do think I would have benefited from therapy if I had received it. I wish I were able to handle more sensory input now without it causing me stress.

 

Sensory things do not cause obvious stress for DS, but he has trouble integrating sensory input, and I think that most likely does cause internal stress and related responses in him.

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I did find it interesting that the article says some of the children no longer tested as having classic autism but were still on the autism spectrum. That didn't make sense to me, but I'm guessing it must have something to do with the way that the ADOS scores and categorizes symptoms.

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I did find it interesting that the article says some of the children no longer tested as having classic autism but were still on the autism spectrum. That didn't make sense to me, but I'm guessing it must have something to do with the way that the ADOS scores and categorizes symptoms.

Yes, there are many kids that might lose a diagnosis because of it. It's what the new DSM-V has created. Kids do lose a diagnosis, it does not mean they have been cured. It just means they are able to function at an acceptable level, and a lot of the smart kids find their own compensations with time. That, unfortunately, is what happens when the criteria for a diagnosis is based on behaviors. But it is what it is ;)

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Your post sounds like it is arguing against OhE's thoughts on ABA, which confused me, because she wasn't talking about it in this thread.

Not arguing, just stating the obvious. OhE's son is getting ABA therapy, so when she says that her son is getting:

"enough interventions going and enough EFFECTIVE interventions"

 

I think it is self-explanatory what intervention she is referring to.

 

And again, not arguing, commenting on some key points from her post.

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Just to make the flow clear, I said interventions in a very vague way and then clarified that the work we've been doing on sensory and retained reflexes has been pivotal here, huge, profound, life altering. I'm drawing the connection that some sensory work is really about retained reflexes and that maybe the researchers didn't totally know what they were doing. Many of these fields are fragmented, with people pigeon holed in the angle or prism they use.

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Story, I'm not a testing guru but that's probably Kanner autism vs dropping to HFA or pdd-nos with DSM4.

From the second study:

 

"On the ADOS assessment, 21% of the children in the enriched environment group were no longer in the autism diagnostic classification after 6 months of therapy, although they all remained on the autism spectrum."

 

The study was done in 2015, two years after the DSM-V came into effect.

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Just to make the flow clear, I said interventions in a very vague way and then clarified that the work we've been doing on sensory and retained reflexes has been pivotal here, huge, profound, life altering. I'm drawing the connection that some sensory work is really about retained reflexes and that maybe the researchers didn't totally know what they were doing. Many of these fields are fragmented, with people pigeon holed in the angle or prism they use.

Ummmm, no! You are making assumptions here. Both studies are published in the US National Library of Medicine (operated by the U.S. Federal Government).

 

https://www.nlm.nih.gov/about/

 

Here's a link to the second one, again.

 

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4682896/

 

If there was any link like the one you are suggesting, I believe it would have been stated. These studies are screened and have to follow certain standards before they can make it in. Otherwise you get the results of the autism/ MMR-vaccine connection fiasco, which the BMJ (British Medical Journal) had to retract. You cannot say that the studies were done by people that do not know what they are doing!

 

http://www.cnn.com/2011/HEALTH/01/05/autism.vaccines/

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Here she talks about the study and also mentions the desensitization process.

 

 

Note, she clarifies that this therapy does not replace other therapies and that emphasis should be given to 20 hours a week, one-to-one teaching (for young nonverbal kids). She explains here what she means.

 

http://www.templegrandin.com/faq.html

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A couple of quotes on ADOS scoring:

 

"Current nosology attempts to capture some of this variation through categorical diagnoses (e.g., Autistic Disorder, Asperger’s Disorder and Pervasive Developmental Disorder, Not Otherwise Specified; APA 2000). However, research has demonstrated that differentiations made between ASD subgroups are often not reliable across different sites (Lord et al.2011). In addition, in several studies, items reflecting social and communication impairments comprised a single factor on ASD diagnostic instruments (e.g., Frazier et al. 2012; Gotham et al. 2007). In light of these findings, proposals for DSM-5 and ICD-11 call for subgroups to be subsumed into a single category of ASD defined by two behavioral domains: Social/Communication Deficits and Fixated or Restricted Interests and Repetitive Behaviors (APA 2011, WHO 2012). Several initial studies support these proposed changes (Frazier et al.2012; Huerta et al. in press, Mandy et al. 2012, though see Mattila et al. 2011 and McPartland et al. 2012). To further capture the heterogeneity, criteria for assessing severity within each domain are recommended."

 

"In the overall total calibration, ADOS diagnostic classifications were used to anchor raw totals to ranges of severity scores. That is, raw totals corresponding to an ADOS classification of “Autism†were mapped on to CSS of 6–10, “ASD†to CSS of 4–5 and “Nonspectrum†to CSS of 1–3. This was done to make the metric more generalizable to other samples, as we cannot assume that the datasets used for calibration in all developmental cells were representative of the heterogeneous ASD population."

 

Details here:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3612387/

 

It is not straightforward at all if you read through the link and look at case examples included.

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http://www.apa.org/monitor/2013/04/dsm.aspx

 

Partial quote:

"A developmental focus.

The DSM-5 re-orders disorders according to the age they're most likely to appear, beginning with neurodevelopmental disorders that occur most often in childhood and ending with disorders associated with old age, such as neurocognitive disorders. The disorders' descriptions also describe how they may present differently throughout the life span.

 

New diagnostic criteria.

Some of the diagnostic criteria will change. A new disorder called autism spectrum disorder, for example, collapses what were previously four separate disorders — autism, Asperger's disorder, childhood disintegrative disorder and pervasive developmental disorder — into one with different levels of symptom severity. Similarly, the DSM-5 eliminates the previous version's four subtypes of schizophrenia. And the section on bipolar disorders now emphasizes changes in activity and energy as well as mood during manic and hypomanic episodes as a way of facilitating earlier detection and increasing diagnostic accuracy.

 

A move toward "dimensional" measures.

While the DSM-5 still lists separate disorders, the new manual will also incorporate dimensional measures of severity for many disorders. That shift is based on the realization that the lines between many disorder categories blur over the life span and that symptoms attributed to a single disorder may also appear in other disorders, just with different levels of severity. With the new autism spectrum disorder, for example, clinicians can choose among three levels of severity in the dimensions of social communication and interaction and repetitive behavior and interests. That shift represents a first step toward thinking about psychopathology in a new way, says Hopwood. "There hasn't been much evidence that disorders are categorical, both in terms of being categorically distinct from each other and from normal behavior," he says. The reason so many people have more than one psychiatric disorder is because many disorders reflect problems in the same dimension, or system, he says, adding that this approach means thinking about what disorders have in common instead of what makes them different."

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Otherwise you get the results of the autism/ MMR-vaccine connection fiasco, which the BMJ (British Medical Journal) had to retract.

Ooops, it was the Lancet not BMJ. Setting right my previous error.

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Temple Grandin: My Experience with Autism

 

 

 

Lengthy but very informative! She starts with sensory sensitivities. I watched this years ago and I am watching it again now with the added knowledge that time and research have provided me. Thought others might find it useful as well.

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I'll also point out the irony that to the researchers the improvement was awesome (scores on an ADOS), but to the parents the progress wasn't enough to be worth continuing. Hmm.

When I first read your comment quoted above, I honestly had no idea what you were referring to. After rereading the study I could only conclude that you must have been referring to this:

 

"A clear limitation of this study was the high proportion of families that did not complete the treatment, often due to the time difficulties involved with doing the exercises in the morning and evening. Although each set of exercises took 15-30 min, setting up the exercises often took additional time, and the impact on the ability of working parents to complete the exercises was significant. For the parents who finished the study, this issue could underlie the variability observed with the daily logs that were completed by the parents, with some parents at 100% compliance and with others at only 36% compliance. In addition, many of the children had recently been diagnosed at the start of the trial and parents continued to search for new therapies for their child after enrolling in our study. We were then forced to terminate their participation in the study. It may be that a higher level of communication (weekly phone calls rather than email on alternate weeks) would have fostered a higher rate of continuing participation."

 

This just reinforced in my mind the fact that we each interpret what we read so differently! It is the main reason why I don't post my own conclusions but prefer instead to provide links and quotes so others can read for themselves and draw their own conclusions. You see, I read that initially and just thought, that's a shame! They may have had an even higher rate of positive outcomes. Also, to me, this:

 

"Although each set of exercises took 15-30 min, setting up the exercises often took additional time, and the impact on the ability of working parents to complete the exercises was significant."

 

and this:

 

"In addition, many of the children had recently been diagnosed at the start of the trial and parents continued to search for new therapies for their child after enrolling in our study. We were then forced to terminate their participation in the study."

 

... could never translate to this:

"but to the parents the progress wasn't enough to be worth continuing." (from your comments)

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