Autism's Drug Problem (Scientific American)

[Guest]

This is just an fyi. I would appreciate it if it is treated as such. It is not my intention to start a debate. 

Thank you,

M

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Autism's Drug Problem

https://www.scientificamerican.com/article/autisms-drug-problem/

[NorthernBeth]

Thanks, we are facing this exact problem right now.  It is nice to know I am not the only one wondering about whether these drugs are safe and effective.  At least it gives me a starting point to discuss with medical professionals.  All the meds in the world aren't going to help if ADHD is really autism.  Sigh.  

[sbgrace]

With my son with autism (and co-occurring conditions), from an early age, we've run into sort of to very "drug pushy" doctors of nearly all stripes and drug pushy therapists. I've never run into a drug pushy pediatric psychiatrist, interestingly. Maybe I've been lucky. 

I will say in our area almost all pediatric psychiatrists won't work with autism at all--won't even see a child or teen with that diagnosis. I felt it discriminatory. I still do, I guess, but maybe this article sort of describes why?  Interesting that they speculate different genetics may cause less response in people autism compared to neurotypical people treated for the same condition. I'm not sure how well supported that is scientific research wise, but it sure seems possible to me based on our experiences. My son not only doesn't respond as well, he often seems to have whatever rare/uncommon side effect too. 

NorthernBeth, you can have both ADHD and autism--my son does. The ADHD med, once we found the right one, does help the ADHD. You're correct that it won't help autism though. 

[Guest]

Sbgrace, here's one article I found that involved studies showing some meds were not effective on ASD kids. It was just a cursory search that I did so there are very likely more.

Common Medication Ineffective for Children with Autism (National Institutes of Health - NIH)

https://www.nih.gov/news-events/nih-research-matters/common-medication-ineffective-children-autism

 

[Guest]

3 hours ago, sbgrace said:

Interesting that they speculate different genetics may cause less response in people autism compared to neurotypical people treated for the same condition.

 

I feel the need to point out though that this is not exactly what they are saying. Here's the quote:

 

Quote

“That is a big problem for any treatment in autism,” Siegel says. With so many genetic variations underlying autism, each individual’s situation is different, so any treatment needs to be tailored to that individual. Depending on the drug, as little as 20 percent of people may benefit from a drug, even within the ideal conditions of a clinical study. In this milieu, aripiprazole and risperidone stand out because they work up to 50 percent of the time; “50 percent is like a homerun,” Siegel says.

 

The stats they are quoting are for the general population, not kids with autism. Since they use the term "people", that is what I am led to infer. They are talking about the effectiveness of dugs in general, for the population that uses them, and then more specifically about risperidone and aripiprazole (again for the general population). As for the first comment about the genetics, it is not new that doctors will run genetic testing now to see which drug will best suit which individual, for example with ADHD meds. So, it would be even more important with autism when there are so many different genetic variations. It is a logical assumption or better yet conclusion that the treatment will have to be tailored to the individual, because of this.

[Janeway]

On 6/22/2018 at 2:08 AM, Moved On said:

This is just an fyi. I would appreciate it if it is treated as such. It is not my intention to start a debate. 

Thank you,

M

______________________________________________________________________________

Autism's Drug Problem

https://www.scientificamerican.com/article/autisms-drug-problem/

I would completely believe it. After two of my children were diagnosed, I took them to the only psychiatrist on our insurance, as that is the only recommendation we had for any sort of "treatment" that was covered by insurance. For the appointment, the psychiatrist left the kids in the waiting room and brought me in and then wrote them out scripts for anti psychotic medications. My children were NEVER diagnosed with psychosis, ever. The doctor did not mention that the medications were anti-psychotics but I knew they were something very strong for serious mental health conditions. I googled the meds from my phone and confirmed what they were. I told the "doctor" that my children did not have psychosis and they were not violent or anything else, and he said they would be some day so they needed to start the medication now. Ummm, no. I tossed the scripts and never went back. MOST parents who have children with ASD just do what they are told, especially early on. I think MOST parents would have just put their children on the medication treadmill that day. Now, whenever I see posts "my child is on medication X and Y and Z, with some A and B and C thrown in to counteract the side effects" I just wanted to tell the parent to stop all meds and start over with something like....sensory therapy, floor time, etc.

[Guest]

Yes, antipsychotics are very commonly used in ASD. You can find tons of stuff (research etc.) on that by just Googling. And I believe you that a doctor would use that as their first-line treatment. I was "encouraged" by the pediatrician that gave us the referral for my boys' evaluations and the neuropsych that saw them to put my youngest on ADHD meds. He is not in school and that is one of the reasons why I would not consider school. She told me that CBT would not be useful to a child that age with ASD. Really? Why? Because they don't have the patience to apply it to younger children? Their schedules are so swamped that they save these strategies for their adult clients, mostly. That is part of the issue here. She would not have the patience to work with a kid my son's age. I told her that I was not interested in ABA and she told me that neither of my two need ABA anyway. I use CBT and curricula that is engaging for my son. When things come up we tackle them as they come. But that is just my approach.

I know parents are cornered about meds and sometimes they are necessary. As parents we have to make our own choices about what is important to ours and their lives. It is not my intention to judge anyone for how they choose to treat their kids. This was why I said what I said in my first post. We all have our own reasons for the decisions we make. I am willing to deal with my son's hyperactivity and impulsive behaviors with other methods and wait until he matures. That means I am willing to tackle the behaviors and whatever comes and help him to find the strategies that work for him. CBT is nonexistent for kids my son's age unless we choose to pay out-of-pocket. DIRFloortime is pretty much nonexistent as well. I found an OT (only one) and the whole thing fell through when they wanted me to sign the papers for our funding and I caught that they had upped the prices of the evaluations from what is in their website to a much higher amount. I don't do business with people like that so I cancelled the whole thing and we just keep doing what we need to, ourselves. Therapies are another issue here because of the funding. They treat it as, it's not your money so you should not have a problem handing it over to them. Ummm, no! My husband has spoken to quite a few people at his place of work with kids on the spectrum and they have had the same issues. Another is overbilling because they send it straight to the government and we don't see it so you don't actually find out until your funding for the year is done. 

Rambling now...  Sorry!

ETA: Please no quotes on the personal info. I will most likely delete it.

[sbgrace]

Moved on, thanks for pointed out I misread (reading while pre-occupied originally) on the genetics. 

In addition to having lots of psychiatrists who won't even assess an autism spectrum person around here, I had a similar experience with therapy. An OCD clinic wouldn't even assess him for CBT (at 14...). The therapist I met, and had to practically beg and enlist other therapists to intervene for even that, basically told me OCD is hard to treat and add autism on top of that and it's impossible. She really said that. Um, ok, well my son has both...so he's supposed to what?? They wouldn't even meet him to see if they could work with him (I'm sure they could have). But good riddance I suppose. 

[Lecka]

I have also had someone offer me Risperdal for my son.  It was really inappropriate since he didn’t spend any time with my son.  

I have met a parent also whose daughter ended up with a Risperdal prescription and absolutely nothing else, after some aggressive behavior in response to a bullying situation.  The bullying situation was never addressed in any way.  No other kind of response was suggested for the girl.  It was very disappointing.  

I think it’s a far cry from legitimate recommendations for medication.  

 

[Guest]

Sbgrace, as parents with special needs kids we are consistently spread thin. I have misread while trying to focus on numerous things at once also ?

And I hear you on the CBT! She said that they would not use CBT on kids my 14 year old son's age either (he was 13 at the time). 

There are some modifications that can be useful for using CBT with someone with ASD. Attwood has done that. There is an article on that. I could find it if you like!

[Lecka]

I think it’s bizarre not to offer CBT.  Where I have lived it’s available for anyone who has a certain language level.  My younger son has even gone through some stuff made for little kids (about managing anxiety).  My older son has done a bit more.  

That is disappointing it’s not available for you guys.  

I think of it as something that counselors and social workers will be able to do with a lot of kids.  

It sounds like they are hearing “autism” and just making a lot of assumptions.  

[Guest]

I'm back. Sorry... my house is a major construction zone right now (renovations). We are completely redoing my 9 year old's room and the adjacent spaces (I am trying to make his bedroom larger) and it is a very trying time for him. 

Lecka, I get very upset when I hear stories like that about bullying. You hear that so often! I get very emotional because I have had family members deal with that and I have also been the kid that spoke up against bullying. It breaks my heart to read cases like this. This boy was not special needs but he was bullied because he defended others, including special needs kids. 

https://www.huffingtonpost.ca/2017/11/27/bullying-canada-schools_a_23289485/

Then you have cases like this one. I watched that on TV a few months ago. It affected me for days.

http://www.cbc.ca/fifth/episodes/2014-2015/the-boy-who-should-have-lived

[Guest]

33 minutes ago, Lecka said:

I think it’s bizarre not to offer CBT.  Where I have lived it’s available for anyone who has a certain language level.  My younger son has even gone through some stuff made for little kids (about managing anxiety).  My older son has done a bit more.  

That is disappointing it’s not available for you guys.  

I think of it as something that counselors and social workers will be able to do with a lot of kids.  

It sounds like they are hearing “autism” and just making a lot of assumptions.  

Lecka, I think the hearing "autism" is one part of the problem. There are many other variables here that have to do with how our medical system works. I think it also has a lot to do with certain therapies being new to us vs. in the US. I assume these are issues that people come across between the different states as well. 

[Guest]

Linking these for anyone that feels they might be useful to them. 

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Here's something from the Beck Institute (Aaron Beck is the founder of CBT):

https://beckinstitute.org/an-introduction-to-cbt-for-people-with-an-autism-spectrum-disorder/

Here's the one I had read about in Attwood's website. This link is from the US National Library of Medicine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2171144/

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ETA: The second link is incorrect. Here's the correct one:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670704/

[Guest]

The neuropsych I spoke to actually specialized in CBT. It was the form of therapy she used, which was why I asked her. We were willing to drive 2 hours both ways for that. But, I am a firm believer that there's always a reason for everything. Like you, Sbgrace, I just took it as, it's probably for the best. 

[4KookieKids]

Wow. We were never offered or had recommended any meds when my ds got the autism diagnosis. Neither the psychologist, pediatrician, or neuropsych ever even mentioned the possibility of a psychiatrist and I took as fact that autism can't really be "medicated." I had no idea any of this was going and feel really lucky now!

[Guest]

A child with autism and language issues can sometimes have certain behaviors due to the inability to communicate that some psychiatrists may feel antipsychotics will deal with the behaviors. Prescribing meds for everything that ails you seems to be the norm for some places. My boys have ADHD besides their autism/ Asperger's diagnoses. I was not surpirsed when we were recommended ADHD meds for my 9 year old  And, note, my son is not aggressive. Overly friendly is more his problem. 

[Lecka]

The person who brought it up with me was a random PA doing school physicals for my kids.  I told him it wasn’t called for and about other options.  He seemed surprised but he was nice about it.  I found it sad he was not more informed.  

[Guest]

Sorry, Lecka. It was a general comment. I wasn't referring to your son. 

[Guest]

19 minutes ago, Lecka said:

 I found it sad he was not more informed.  

 

Yes, that is how I feel when I hear about cases like that as well. Another parent, less informed, may have deferred to the "experts" advice. 

ETA: Liked post in agreement with your comments and how you handled it. 

[NorthernBeth]

So interesting all of this.  We also had a psychologist say there was no way my son would be capable of CBT.  He more or less said due to his supposed  low IQ there would be no point.  ( Note:  my son is perfectly capable of having discussions on all sorts of things that interest him. He can self-reflect when it suits him to.  He is not incapble of thought or something.)   He literally would barely talk to my son and only wanted to talk to me ABOUT him, rather than talk directly TO him.  He actually told me to make sure to find a babysitter for my son or not to bother coming for the appointment.  I finally had to speak to children's services about the doctor and they were able to find a less qualified but far more capable therapist who was willing to work directly WITH my son.  I don't think she does JUST straight CBT-- she is very much a proponent of using whatever works.  But she is wonderful with him.  

I always thought the other guy was just being difficult.  I didn't realize it was a  "thing".  

[Guest]

4 hours ago, NorthernBeth said:

So interesting all of this.  We also had a psychologist say there was no way my son would be capable of CBT...

I always thought the other guy was just being difficult.  I didn't realize it was a  "thing".  

 

Sigh! You have to remember where we live. Some things are relatively new here and I believe that CBT with children is relatively new overall. Two guides (among the several that I have), the adolescent and adult book was published in 2012, the one for children was published a year ago this month. I would have to check the others but I think they are all fairly recent. In the case of autism, I think it is even more recent. CBT for adults has been around since the 1960s according to the Beck Institute. The links on the modified CBT for autism are from 2015. 

 

[Guest]

4 hours ago, Moved On said:

Here's the one I had read about in Attwood's website. This link is from the US National Library of Medicine.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2171144/

 

Yikes! I have so many tabs open on my laptop (as usual), because I go back and forth between things, that I posted the wrong link. 
Here's the correct one. Apologies for the confusion ?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4670704/

ETA: I added the correct link in the previous post as well. 

[Guest]

NorthernBeth, the like to your post is for finding a good therapist. Not for the way the first one dealt with it.

[Guest]

1 hour ago, Moved On said:

A child with autism and language issues can sometimes have certain behaviors due to the inability to communicate that some psychiatrists may feel antipsychotics will deal with the behaviors. Prescribing meds for everything that ails you seems to be the norm for some places. 

 

Well, apparently the findings on communication issues being linked to aggression in autism are mixed. Throught I would add this since I made the above comment. 

Quote

Our study shows that children with verbal communication deficits reported more aggression toward other people than verbal children without statistically significant differences. These data are reported by both parents and then confirmed by the psychiatrist during his observation.⁶ Since behavior is often a form of communication, many individuals with autism (as well as those without autism) voice their wants, needs, or concerns through behaviors rather than words.^7,12 In any case in our study there is no statistically significant correlation between absence of verbal communication and aggression, as confirmed by the literature, at least according to the clinical observation,⁴ although it is reported that the lack of communication can be a risk factor.^6,7

Regarding other-aggression and self-aggression there is no statistically difference between HF and LF, although the parent report unpredictably showed a slight increase in both aggressions in HF, but clinician standardized observation evidence was contrary with more other-aggression and self-aggression in LF ASD children. According to our study, other authors found little correlation between aggression and IQ in patients diagnosed with ASD,⁴ suggesting that it is probably clinical severity of the individual case to determine the occurrence of aggressive behavior, rather than cognitive level, though the latter may worsen a clinical picture that is already compromised.¹⁹

 

Here's the link:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4905127/

[Guest]

NorthernBeth, the book Overcoming Anxiety in Children and Teens by Jed Baker that I mentioned to you in another thread is CBT based also. That was published in 2015.

I don't know how many therapists would be patient enough or willing to treat kids using CBT. This may be the issue! I have seen therapists listed that focus primarily on mindfulness with kids (a component of CBT that is often incorporated but it is not the core therapy) but that is pretty much it. And I am constantly searching, every couple of months.  

[sbgrace]

Thank you for those links Moved On. 

[Guest]

23 minutes ago, sbgrace said:

Thank you for those links Moved On. 

 

You saw I fixed the second link in the post, right? It was the wrong link. I posted about it in a later post and added the correct one to the first post as well ? 

I wonder if some therapists just don't keep up with the times and changes in their therapies? I wonder if this is one of the reasons why we are being told that they do not do CBT with kids a certain age or kids with ASD!

[sbgrace]

I did see the new link, thanks so much.

It has to be either some level of ignorance in their field/about autism and/or lack of care doesn't it? In my case, with the therapist, I was just flabbergasted. I wish I had had, in that moment, presence of mind to respond differently. It wouldn't have helped my son, that door was clearly closed, but maybe it would have helped someone in the future. 

 

[Guest]

I know! They get us when we are most vunlerable and it is difficult to think of appropriate responses sometimes. I had that happen with the neuropsych. She was pretty pushy on the meds, trying to tell me it was me she was thinking about. She brought me to tears. I don't cry often so that didn't help with me coming up with an appropriate response. But, at the end of the day it was my decision. After careful consideration I decided to keep going the way we were. One of the stories that has inspired me is that of Stephen Shore and how the support from his famiy brought him to where he is today. 

https://www.autismspeaks.org/family-services/nantucket-autism-speaks-resource-center/news-and-press-releases/stephen-shore-shares

I won't even mention Temple Grandin and her mom! My collection of her books speaks for itself  ?

By the way, the link from the US National Library of Medicine mentions Attwood's research but I have not had the chance to read it yet and I assumed that was the one. Here's the one from Attwood's website:

Modifications to Cognitive Behaviour Therapy to Accommodate the Cognitive Profile 

http://www.tonyattwood.com.au/books-by-tony-m/archived-papers/81-modifications-to-cognitive-behaviour-therapy-to-accommodate-the-cognitive-profile

I have to reread Attwood's (it's been a while) and the one from Beck's website to see the connections between them. I'll try to get back to this tomorrow. 

 

[Guest]

Quote

In the interim, my parents provided what we would today refer to as an intensive, home-based early-intervention program that emphasized movement, sensory integration, music, narration, and imitation. At first, my parents tried to get me to imitate them—especially my mother. When that failed, they started imitating my sounds and movements, which made me aware of them in my environment. Only then were they able to pull me out of my own world and into theirs. In my experience, the most important educational implication has been that before any significant teaching can happen, a trusting relationship has to be developed between teacher and student.

I Took Watches Apart and Put Them Back Together

At age 4, I started dismantling watches with a sharp kitchen knife. When my mother saw me demonstrating this skill, she began to provide me with additional watches, radios, and other things to take apart. Also, my parents both sat with me to make sure I got these things back together again in good working order! It was not hard for me to reassemble these mechanical devices. However, it was an important lesson my parents imparted—that if I took something apart, I should be able to put it back together again.

My mother did most of the caretaking and “early intervention,” because in those days, it was the father’s responsibility to work and earn money. Additionally, I think my father was pretty confused in terms of what to do with me. However, he still loved and supported me the best way he knew how.

Grandin, Temple. Different . . . Not Less: Inspiring Stories of Achievement and Successful Employment from Adults with Autism, Asperger's, and ADHD (Kindle Locations 619-622). Future Horizons. Kindle Edition. 

 

From Stephen Shore's profile found in Temple Grandin's book Different... Not Less.

[Lecka]

Just to share.... the Incredible 5-point Scale is what I have seen most, and we have a copy of When My Worries Get Too Big.  

Then for things I am aware of, Social Thinking is huge.  

There are a lot of other programs shared on the Social Thinking website, too.  

These are all things parents can order and use.  

I will say for the Incredible 5-Point Scale, my understanding is that Zones of Regulation has incorporated a lot of things from the Incredible 5-Point Scale.  I have no personal experience with Zones of Regulation.

Anyway these are CBT programs made by people who work with kids with autism.

 

 

[Guest]

4 hours ago, Lecka said:

Anyway these are CBT programs made by people who work with kids with autism.

 

Actually, this is not accurate. 

1) Leah Kuypers (Zones of Regulation) has a Masters of Arts in Education and is a registered and licensed OT. She is not a psych and not certified for CBT.

2) Kari Dunn Buron (The Incredible 5 Point Scale) has a MS and is an Autism Education Specialist. Also not a psych and also not certified in CBT. 

3) The Social Thinking Company team consists primarily of SLPs. There is only one psych on the team and she too is not CBT certified. 

Quote from their site:

Quote

The Social Thinking framework incorporates cognitive psychology constructs repackaged in a way that respects the developmental level and concrete mind of a client on the autism spectrum or those with other social learning challenges.

 

Now something from the Beck Institute:

Cognitive Behavior Therapist - How to Find One

https://beckinstitute.org/cognitive-behavior-therapist-how-to-find-one/

About Dr. Beck (he developed CBT)

https://beckinstitute.org/about-beck/

If you noticed when I mentioned Jed Baker I said CBT based. While Jed Baker is a clinical psychologist, I have not found in his profile any mention that he is CBT certified. His book (if you noticed it does not mention CBT in the title) introduces CBT strategies. It does not claim to be CBT therapy. 

I have not listed or recommended any of my CBT books. Those are true CBT books and they are pricey. Just two that I mentioned above (without specifics) cost me  over $100. Most are for professionals. They would also overwhelm most parents. I would not recommend them and have someone spend the money only to realize they cannot apply it and are out "X" amout of money. It is very easy to just go to a site like Amazon and search CBT and look at the resources and see what someone feels they can work with. I check the credentials of the authors, for the ones I buy. People can buy simple workbook type resources for CBT strategies to apply for themselves or on their children. Using them on a child with autism or ADHD can be a challenge. So it really depends on what the person choosing to try true CBT resources feels he/ she can handle. 

There are tons of resources out there these days claiming to do CBT. It all depends on what the person choosing such resources is looking to accomplish. But, a program/ book that introduces CBT strategies or "repackages" the CBT concepts cannot be called CBT. 

[Guest]

I wanted to clarify something else here, as I think that some of these programs may have created some confusion. CBT is not a social skills approach. Its purpose is very different. While someone may use elements of cognitive neuropsychology, that again does not make it CBT. CBT is very specific. I use cognitive principles in every aspect of our life with my boys, that part is not what I call teaching CBT strategies to them. When I focus on CBT strategies with them, it is for a very specific reason and goal.