Mild Autism ABA therapy or no? --13 year old ds

[bethben]

My son was diagnosed with mild autism about 6 months ago.  It mainly shows up in his social interactions.  Since that time, he has gotten involved in a twice weekly karate class and has found a youth group he enjoys and attends weekly also.  He is pretty quite on his responses to the point you can't hear him/ understand him and tends to not start conversation.  I remember being that kid at his age.  People constantly had to tell me to speak up and I was pretty shy.  At home, he is different - he will initiate conversation and speak at an appropriate level most of the time.  He does respond with an "I don't know" because either he really doesn't or doesn't care to talk.

His pediatrician made clear that while he was writing a referral, he did not believe ABA therapy would help at his age.  I'm on the fence.  It's basically an enhanced social group with cues from therapists to aid him in learning how to socialize.  His karate class is making sure he is learning leadership skills (in small part), learning how to give a firm handshake and look people in the eye, and teaching him how to avoid negative confrontations with bullies.  He has raised his hand to answer questions when the group as a whole was asked (and he speaks clearly enough to be heard).   His youth group is a great group of kids where he is really starting to goof around with people and have fun.  He is not running from social events and going as far as to write them on the calendar so that we will be sure to remember to drive him.  His autism diagnosis was done before he started becoming involved in all these activities.  

All that to say, is ABA at his age a waste of time or would he actually benefit?  What is your experience with an older child?  

[PeterPan]

The quality of the social skills group will depend on who's running it. We've done a number of them now, and really even when they're not AWESOME, they're still worthwhile. Does that make sense? He might make friends, or you might connect with people you like to hang with, friends for you. Just for that it can be worth something. Some of the programs around here tend toward transitions to work or toward teaching leisure skills. They're just good stuff.

I have a pet peeve with SLPs who walk up to my ds and tell (command) him to look them in the eye. They (SLPs) aren't very well trained for autism, and they really think they know something. I've kinda grown weary of it. The most intriguing therapy to me, if you were just saying pick one and only one, is RDI. It's more intuitive, based on discovery, and it lets them find the skills for themselves through carefully nurtured interactions. RDI feels good to do with my ds, is natural, and gets good results. It's not forced. If you can find someone to do even an intake eval for you and give you a list of skills and consult once a month, you might like that.

I doubt you're looking for in-home ABA, either strict or broader umbrella. Or maybe you are? We use a behaviorist who is sort of broad umbrella, meaning it's called ABA but she's bringing in lots of theories and skills. But, like I said, your ds is beyond a lot of that. RDI is one that is able to do an intake eval and target him right where he is for skills, which is very handy. And it's one you just do what you have time for and drop when you don't.

I think your ideas for getting out into the community are wonderful. You can also go through the book lists at Social Thinking.com and see what is suggested for teens. Our library system has most of the books, so you can just get them and go through them, one book a month. He might like to have a relationship with a psychologist or counselor who specializes in teens with autism that he could talk with to problem solve. He might find it useful. But that's just really what you're seeing, what he needs.

A lot of ABA in the early years is about language, compliance, emotional regulation, improving interaction. I hear you on wanting to leave no stone unturned. I'm just saying by their teen years the range is broader of the people they interact with. The practitioners want to help the person problem solve, so a counseling set-up is pretty common. It will be the most expensive, but it will be the best-trained person. Your social skills groups are usually SLPs, sigh, and they're kinda underpowered to deal with stuff. If you have problems you want to solve, go up the ladder to someone more autism-specific like a behaviorist or a phd counselor.

Yes, there is plenty for him to grow in if he gets contact with good professionals who can work at his level, ABSOLUTELY. The only question is who those professionals should be. The more you want him approached on a cognitive level, the more you're talking about a phd psychologist or counselor, someone who does CBT, someone who can talk through scenarios and strategies and skills with him and get him to the next place. If that's what he wants, that's what you would do.

Just for your contemplation, a recent Washington Post article https://www.washingtonpost.com/news/parenting/wp/2018/03/05/i-stopped-calling-autistic-people-high-functioning-because-of-my-son-heres-why/?noredirect=on&utm_term=.d9aec262c34c The boy she describes is like my ds, but my point with the article is just that "mild" was still significant enough to benefit from support, help, and intervention. By definition, he would benefit from support, yes.

[bethben]

He doesn't have negative behaviors.  He doesn't have trouble regulating emotions- he's actually the opposite - he doesn't like to show too much emotion at all.  When he gets upset/ is ready to cry, he's most likely to turn his head, tilt his head up, and blink away the tears.  He has no trouble with transitions.  Other than his social hesitancy and what some would consider shyness, he's pretty typical.  

[Pawz4me]

Bethben, your DS sounds very much like my DS19. I can't really voice an opinion about whether or not you should pursue ABA. I don't have any experience with it as it's something that, by the time we got an official diagnosis, didn't seem like it would have been beneficial. I'm not sure it would have been beneficial for DS at any age. We did find a local non-profit that provided social skills classes for all kids who needed them. The non-profit was mostly aimed at kids on the spectrum or who had ADHD, but the classes were open to all kids, even those w/o a diagnosis. They tried very hard to place the kids in appropriate classes, so the ones who needed more help were together, the ones who needed just a bit of help were together, etc. The classes were run by young college grads with degrees in psychology or a related field, and while they may not have been as professional as someone with a more advanced degree or more experience, I think the age of the instructors was a huge benefit. They weren't all that much older than DS at the time, so he related to them very well. DS attended those weekly classes for about a year and a half and I think they were helpful. Not hugely hugely helpful, but one more good experience to have under his belt.

All that to say you might look around and see if there are any social skils classes available in your area.

[Guest]

2 hours ago, Pawz4me said:

Bethben, your DS sounds very much like my DS19. I can't really voice an opinion about whether or not you should pursue ABA. I don't have any experience with it as it's something that, by the time we got an official diagnosis, didn't seem like it would have been beneficial. I'm not sure it would have been beneficial for DS at any age. We did find a local non-profit that provided social skills classes for all kids who needed them. The non-profit was mostly aimed at kids on the spectrum or who had ADHD, but the classes were open to all kids, even those w/o a diagnosis. They tried very hard to place the kids in appropriate classes, so the ones who needed more help were together, the ones who needed just a bit of help were together, etc. The classes were run by young college grads with degrees in psychology or a related field, and while they may not have been as professional as someone with a more advanced degree or more experience, I think the age of the instructors was a huge benefit. They weren't all that much older than DS at the time, so he related to them very well. DS attended those weekly classes for about a year and a half and I think they were helpful. Not hugely hugely helpful, but one more good experience to have under his belt.

All that to say you might look around and see if there are any social skils classes available in your area.

May I have some social skills classes like this around here please? Sometimes the new grads, fresh out of university, are the most on the ball and more passionate about what they do.

Bethben, I have two on the spectrum. My boys got their second diagnosis last year after full autism evals with a neuropsychologist. My 14 year old sounds similar to yours in some ways. My 9 year old is more affected due to some language delays, but mostly due to a strong "H" from ADHD (although we are trying a diet approach and he has mellowed significantly, so I'm keeping my fingers crossed). Anyway, I am not pro-ABA so I said to the neuropsychologist before she could say anything, "I just want to let you know that we are not interested in ABA". Her reply was, "Your kids do not need ABA". 

Just passing along our experience in case it is helpful in some way.

[kbutton]

We had two ABA therapists, but we started a bit younger. We wanted someone more familiar with autism than other people who had worked with him. The first one worked on social skills and compliance during difficult tasks--not getting too goofy or too noncompliant if something got hard. A LOT of stuff got better with ADHD meds that were as effective as needed (it took time for us to find the right dosing, duration of dose). Some maturity helped. In general, I think it was time well spent when they worked on social skills--they did everything from read about social situations in books and discuss them to taking outings to do tasks where he had to assert himself (like purposefully building in phone skills or ask the manager skills at stores), volunteering together at our church's thrift store, etc. He really responded well to having scenarios come up in books that he had to think through and talk through--less intimidating than confronting them real time. 

Oh, he also benefitted big time from some face/body language work mapped to grades of emotions. He had kind of a mental bucket for positive or negative without much room for shades of meaning to words, faces, body language, tone of voice, etc. 

He also did some work on solifying daily routines with the therapist.

[Terabith]

What's worked the best for us is Dungeons and Dragons.  The public library has 3-4 hour sessions a few times a week.  And my kid loves it so much.  And it's been so great for her social skills, emotional regulation, even math skills.  I've heard improv classes have a similar thing.  I think the key has been that she loves it so much.  At 13, I might look for a counselor for emotional support, but I probably wouldn't do ABA, but I would look for something about which he is passionate and cultivate the heck out of whatever that is.  

[Guest]

On 7/21/2018 at 5:07 PM, PeterPan said:

Just for your contemplation, a recent Washington Post article https://www.washingtonpost.com/news/parenting/wp/2018/03/05/i-stopped-calling-autistic-people-high-functioning-because-of-my-son-heres-why/?noredirect=on&utm_term=.d9aec262c34c 

What a doom and gloom article! And this person is a psychologist? Yes, there are challenges in life and we face them, because that's what families are supposed to do. There are people out there with terminally ill children that would gladly take what we face, if it meant their child would survive and have a possibility of a future. People with severely autistic kids are raising kids, and later adults, and they will never be able to receive a hug or hear the words, "I love you, Mom/Dad!" How much we lack perseverance these days!

[mellifera33]

1 hour ago, Moved On said:

What a doom and gloom article! And this person is a psychologist? Yes, there are challenges in life and we face them, because that's what families are supposed to do. There are people out there with terminally ill children that would gladly take what we face, if it meant their child would survive and have a possibility of a future. People with severely autistic kids are raising kids, and later adults, and they will never be able to receive a hug or hear the words, "I love you, Mom/Dad!" How much we lack perseverance these days!

 

I didn't think it was doom and gloom. The employment statistics for autistic adults are pretty bleak, and I think that as a parent of an autistic child, it is important to keep that in mind. The general public seems to think that Aspergers is a one way ticket to a plush coding job. Many autistic kids with level 1 support needs are not even receiving services in public school. They graduate, and then what? I think that it is beneficial to take a realistic look at what happens to "high functioning" autistic adults so that we can provide our autistic kids with what they really need to succeed, because the usual method is obviously not working. 

[Guest]

18 minutes ago, mellifera33 said:

 

I didn't think it was doom and gloom. The employment statistics for autistic adults are pretty bleak, and I think that as a parent of an autistic child, it is important to keep that in mind. The general public seems to think that Aspergers is a one way ticket to a plush coding job. Many autistic kids with level 1 support needs are not even receiving services in public school. They graduate, and then what? I think that it is beneficial to take a realistic look at what happens to "high functioning" autistic adults so that we can provide our autistic kids with what they really need to succeed, because the usual method is obviously not working. 

Reframed, maybe the article would say that. To me, the goal of the article is not that at all. 

Here's her closing:

Quote

With the publication of the Diagnostic and Statistical Manual of Mental Disorders-5th edition in 2013, professionals made the spectrum concept official. It’s now autism spectrum disorder for everyone who qualifies for a diagnosis. No more modifiers or alternative labels. And that’s as it should be.

There's no mention of wanting AS specific services! There's no point to this article that I can see other than to say, "You think those with severe kids have it bad? Look what I have to face!" That is all I'm seeing. As for the job situation, it's not just about what therapies they receive. There's so much focus these days on normalizing rather than utilizing people in the areas where they can thrive. There's no longer that community effort and understanding these days. When I was a kid there was so much more community support and understanding. Now, well, I won't bother to go there.

 

[mellifera33]

1 hour ago, Moved On said:

As for the job situation, it's not just about what therapies they receive. There's so much focus these days on normalizing rather than utilizing people in the areas where they can thrive. 

 

 

I agree with this. My kiddo with asd is only 10, but as he gets older I know that we will be looking hard at balancing his gifts and deficits as far as employment. I even have it in the back of my mind that there might be a family business started at some point based around his gifts. 

And maybe I'm reading more into the article than is really there. I  see 

With the publication of the Diagnostic and Statistical Manual of Mental Disorders-5th edition in 2013, professionals made the spectrum concept official. It’s now autism spectrum disorder for everyone who qualifies for a diagnosis. No more modifiers or alternative labels. And that’s as it should be.

as meaning that high functioning autistic people should be eligible for appropriate services, rather than being seen as extra special quirky or automatically steered toward IT. I guess I'm reading my own optimism into it. lol

[Guest]

1 hour ago, mellifera33 said:

 

I agree with this. My kiddo with asd is only 10, but as he gets older I know that we will be looking hard at balancing his gifts and deficits as far as employment. I even have it in the back of my mind that there might be a family business started at some point based around his gifts. 

And maybe I'm reading more into the article than is really there. I  see 

Quote

With the publication of the Diagnostic and Statistical Manual of Mental Disorders-5th edition in 2013, professionals made the spectrum concept official. It’s now autism spectrum disorder for everyone who qualifies for a diagnosis. No more modifiers or alternative labels. And that’s as it should be.

as meaning that high functioning autistic people should be eligible for appropriate services, rather than being seen as extra special quirky or automatically steered toward IT. I guess I'm reading my own optimism into it. lol

 

Yes, I am right there with you on the, thinking future solutions and possibilities for my two based on their strengths and passions. We work on the weakness now, not as a means of normalizing but as a way for them to understand how some out in the world think, how it may differ with their own thinking, and how they can behave in socially acceptable ways while still remaining who they are. It is why ABA, the Social Thinking Company, and approaches of that sort are out for me. I'm for cognitive and social-cognitive psychology and I work with my kids based on their principles.

As for the article, if that is what she was trying to say then she would not be for the DSM-5 changes, as it has now guaranteed no specialized therapies will ever exist for those with AS or higher functioning. So, in my eyes, there was no other point to the article other than what I said before.

[Guest]

(Personal thoughts, unrelated to the topic. Post withdrawn.)

[4KookieKids]

Wow. That article was hard to read. Mostly because it feels like something I could’ve written...  I’m not doom and gloom I don’t think, but it really is hard sometimes... DS9 is so smart and so eloquent and insightful, but he’s also so... unpredictable. To me, at least. Probably more predictable if I thought like him. One thing that concerns me is just that life with him only seems to be getting harder, and this is something I think about when deciding whether or not to do certain interventions: at 3, he easily passed ad normal with odd quirks lining up how toys and such. At 5, somewhat less so. At 6, he still passed as normal but quirky outside of the home, but home life was becoming chaotic. At 8, things really spiraled out of control and he started yelling at me and hurting others more accidentally. I worry about what’s coming next, I guess. But I also feel like those outside the home just see “mild” autism (even though his official dx was ASD-2), or they don’t see autism at all and it’s like they just assume that my kid needs discipline and I’m overreacting and incompetent that I often feel overwhelmed or like I had a really hard day.  He’s so smart- he can figure these things out, right? Right...

I’m probably rambling now. I like everyone else’s suggestions. We’re in an area where no one would do ABA for a kid over five anyway. We did have access to a wonderful social group run by a certified therapeutic recreational specialist. It was a total of four boys all with high functioning autism around the same age. I’m so glad we had that opportunity and hope to do it again in the future.

[PeterPan]

Kookie, to me it's pretty telling that the things people are worrying about at 18-24 aren't what they were worried about at 8 and 10. I don't think we have to buy trouble, but reality is demands will increase as they age, supports will decrease. Complexity and stress will increase, and they're going to be trying to do things independently. Sometimes our custom home environment is smoothing over challenges that don't become more obvious till they get out of the home. 

I can tell you the professionals working with young adults in the workshops I go to are BEGGING people to do interventions and not think that getting them through college will solve everything. We've had stories like that on the board here, and it's hard stuff to wrangle with, that a kid could be super bright and unhire-able, unable to keep a job, unable to navigate the complex and dynamic situations of life. People like Michelle Garcia Winner are begging people to prioritize social skills, living skills (independent living, self-care, leisure, self-regulation, etc.). 

I talk with people (irl) who live in states where it's really, really hard to get access. Around here, there's quite a bit of access to intervention and therapies in major cities. If you're more rural, you'll need to move or drive. But at least it's HERE. But I've talked with people who had one behaviorist for a COUNTY. That's just astonishing to me. Now those kids will hopefully get some services when they go to school, but I get the impression even the schools are under-trained and under-providing services. One state just got their first grad level autism certificate program, meaning they're only just beginning to train workers for the schools to be autism experts and coordinate services. But yes, that might be an explanation why you're not seeing availability, because services are assumed to be happening through the schools.

 

[Lecka]

Kookie — if you are currently having behavior issues I think you need to reach out and try to find out what resources exist for you locally.  Maybe ask service providers you are already seeing.  Maybe send an email to the local ABA asking if they are aware of services for your son’s age.  Maybe ask your pediatrician.  

I hope there is something available in your area.  

I had a behavior plan for about 3 years with my younger son.  It really did help.  That’s what was recommended for us, you can see what is recommended for your situation.  

I also think, this might be a higher priority right now (depending).  I think you would be fine to look at doing Barton Reading or another curriculum for struggling readers with your daughter.  It would be more open and go and you wouldn’t need to research that as much.  If you have a time crunch I think that would be fine.  

For me personally, the behavior issues are more complicated to handle than reading remediation.  The thing about reading remediation is you are only doing it for certain times of the day, whatever length of time and number of sessions you decide.  The rest of the time is just regular life.  With behavior issues they can happen anytime of the day and for me with a behavior plan — the behavior plan is something I follow 24/7.  

They are both important and both kids are important (plus your other kids), but I think overall getting a handle on behavior issues are more important because they can be disruptive to the whole family.

Just to be clear — when I say behavior issues the most concerning ones are aggressive (physical) or destructive (physical) behavior.  If either of those are issues then those are serious issues and need to be a top priority.

It is hard on a forum because people use words differently, and I don’t mean what I would call minor behavior issues.

Also watch out for stuff like if you feel like you need to give in while he’s angry or yelling so he doesn’t escalate to physical aggression or destructive behavior.  I hope there is nothing like that going on, but it can happen and it’s a really hard place to be and a hard cycle to be in.  That is something though that you can get help for, and while he is on the younger side it is a good time.  

I think sure there may be random people judging you.  I’m sorry that is happening but they don’t know anything about autism.  For people who know about autism no one will blame you, they understand how good parents doing things that will be effective with other kids can get into a bad cycle.  

[Guest]

In the article the woman is describing a 10 year old. The OP who started this thread is describing a 13 year old which, just like my own, is not having behaviors. The mom is putting him out in the community, the real world, where he can see in action how people think and act. It is not a group of kids with social issues and prefabricated scenarios. While that might be what some parents want and some kids need, it is not necessarily the right or only way to go for all kids and families. 

As for life skills, in a homeschool environment, I can't see why things like this cannot be taught in the home without being told that no you have to do it this way because certain people say so. Back in Temple Grandin's time and Stephen Shore's time kids were taught social skills in the world playing with other kids in the neighborhood. Social skills can be taught through many and various resources like social stories that prepare a child before a real social event or interaction. There are many ways to go about things without having to therapize everything. And the studies are showing that training parents to do certain therapies has shown better results. 

[Lecka]

Someone else replying in the thread mentioned behavior issues, I was not responding to the op.  

As far as the OP — I tend to doubt that ABA would be helpful for her situation, but I don’t know much about that situation and so I didn’t respond.  I do know more about kids who do have behavior issues and that’s why I responded to another poster on the thread.  

The spectrum is definitely very broad and it is not one-size-fits-all in the slightest.  

I think parents have to see what will benefit their own kids and not just go along with blanket recommendations. 

Really for the OP I think it would be good to find out about options in the community and then email or schedule an initial consult and kind-of ask “what would you recommend to me, how would you work with my child?” And see if any of it seemed worthwhile or not.  

Edit:  also sometimes when kids get diagnosed they get recommended a certain kind of treatment or follow-up, and if that information is available I think that is a good starting point.  

[4KookieKids]

 Thanks Lecka. There really is nothing in my area though. I’m on a waitlist for a place that does satellite stuff an hour away, but that’s it. Last time me I posted about this child, you and PeterPan had so many things to say and encouragement about finding a behaviorist and getting help and I spent a month calling every lead and every referral on possible lead for close to two hours a day. It’s possible things have changed in the last three months. Realistically, I don’t live in a complete void- it’s just that I live in an area where there are so few providers that all of them have waiting lists several years long...

[Lecka]

For me also, I have lived two places since my son was diagnosed, and in both places the autism professional community is small enough that I think that anyone in it could hear a little about a child (age, level, traits, etc) and have a decent idea as to what person/area (but in reality it is a person in a specialty — people matter) and be able to steer someone towards a person/area to potentially have a consult, if any services were even needed.

My own son has started to do some activities without a 1:1 aide where he previously truly needed a 1:1 aide, and I have received only support and encouragement.  I know there is a stereotype that people are trying to have kids receive unneeded services, but that has not been my experience, people have encouraged me strongly to try things without an aide when they thought my son was ready, and right now he is having a lot of success at both gymnastics and church, which were previously activities where he either had to have aide support or couldn’t participate even with aide support.  

But if kids are able to participate then that is really what everyone wants!  

[Lecka]

Kookie, that’s too bad.  I think so call the satellite place periodically to make sure you’re still on the waiting list and check your status or whatever.  Sometimes it helps or at least if they call you once and you don’t answer the phone, they won’t move down to the next name on the list.  

 

 

[Guest]

And I was responding to those that were making indirect statements that all kids will have these issues in the future, while adding an article from the mom of a 10 year old who is all for putting all kids in one diagnostic and treatment bucket. 

[Guest]

There are also kids with other combined diagnoses and LDs, therefore, it makes it really difficult to pinpoint what is causing the behaviors. Even giftedness can mimic ASD and ADHD like behaviors and be misdiagnosed or the person can have both diagnoses, something I thought the other poster might want to know about.

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, OCD, Asperger's, Depression, and Other Disorders

https://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults-ebook/dp/B008RQA6S0/ref=sr_1_1?ie=UTF8&qid=1532455067&sr=8-1&keywords=misdiagnosis

When recommending ABA it is also wise to inform that much like any other therapy, it does not work for all kids and is usually used for those in the moderate to severe range after a certain age group. It is most commonly used for kids as an intensive early intervention approach.

 

[bethben]

3 hours ago, Moved On said:

In the article the woman is describing a 10 year old. The OP who started this thread is describing a 13 year old which, just like my own, is not having behaviors. The mom is putting him out in the community, the real world, where he can see in action how people think and act. It is not a group of kids with social issues and prefabricated scenarios. While that might be what some parents want and some kids need, it is not necessarily the right or only way to go for all kids and families. 

As for life skills, in a homeschool environment, I can't see why things like this cannot be taught in the home without being told that no you have to do it this way because certain people say so. Back in Temple Grandin's time and Stephen Shore's time kids were taught social skills in the world playing with other kids in the neighborhood. Social skills can be taught through many and various resources like social stories that prepare a child before a real social event or interaction. There are many ways to go about things without having to therapize everything. And the studies are showing that training parents to do certain therapies has shown better results. 

 

This is helpful.  I did email his youth director and ask him about his behavior at youth group.  According to the youth director, he still is quite quiet at times and mumbles answers to questions, BUT, once he warms up, his voice volume is loud enough and he talks a lot more.  They're seeing him open up more as he gets more comfortable.  My guess is that with ABA therapy ( it's mostly a social group as far as I can tell), he'll behave very reserved at first and then get more comfortable as time goes on which they will consider a success of their methods.  I think this is his normal MO.  We are sending him to a smaller public charter school next year mostly because we just feel he needs to get more comfortable around people.  There will be grades K-12 eventually with his grade leading the way into the upper grades.  His class will always be the oldest grade in the school and his class size will be around 50 kids so small for a public school around here at least.  He was starting to cocoon at home more and more.  Also, it's for my benefit.  I was worn out and burned to a crisp homeschooling.  

[Guest]

This is what I am always trying to say! We all make choices based on what suits our own situation, unique child, and family circumstances. My goal is information. I like to see people having all the information so that they can make informed decisions and not feel pressured to follow what a specific person or particular group feels is the best choice based on their own situation.

I wish all goes well with your son and that he continues to make progress and thrive ☺️

[PeterPan]

Kookie That's hard. ? I also think some things are long term, not a fix. It's years of putting in and getting into his head and helping him learn the skills. I think you can look at percentages of occurrences and decrease rather than just saying yes/no. So behaviors occurring LESS is a win! If they're occurring MORE that's a problem. That needs data and a plan. But I try to remember that occurring less is a win too. 

[Guest]

On 7/24/2018 at 11:02 AM, Moved On said:

There are also kids with other combined diagnoses and LDs, therefore, it makes it really difficult to pinpoint what is causing the behaviors. Even giftedness can mimic ASD and ADHD like behaviors and be misdiagnosed or the person can have both diagnoses, something I thought the other poster might want to know about.

Misdiagnosis and Dual Diagnoses of Gifted Children and Adults: ADHD, Bipolar, OCD, Asperger's, Depression, and Other Disorders

https://www.amazon.com/Misdiagnosis-Diagnoses-Gifted-Children-Adults-ebook/dp/B008RQA6S0/ref=sr_1_1?ie=UTF8&qid=1532455067&sr=8-1&keywords=misdiagnosis

When recommending ABA it is also wise to inform that much like any other therapy, it does not work for all kids and is usually used for those in the moderate to severe range after a certain age group. It is most commonly used for kids as an intensive early intervention approach.

 

 

4KookieKids, in case it wasn't clear by my previous comments, the above post was FYI for you.

Know, also, that their behavior at ages 8-10 will not be the same as 10-12 and later in the teen years. They are called developmental delays for a reason. Sometimes, however, when there are other labels in the mix or if anxiety kicks in as they get older and the responsibilities grow, new concerns can arise. But anxiety and anxiety meds are so common in the general population without ASD these days that it is not really alarming for people on the spectrum to also develop it, given certain challenges unique to ASD like SPD. Some will be able to deal with anxiety using CBT and mindfulness strategies, while others may need a combination of meds and strategies. Some may be lucky enough to have a good psych/ neuropsych that guides them through the process and makes recommendations, while others (like my family) have to educate themselves in order to find the best solutions to tackle whatever challenges come along. It is why I am teaching CBT and mindfulness strategies to my two boys. I'm hoping that if they become a part of life for them, they will always have them to help them through any challenges they may face.

I hope you find the best approach for your boy,

M

[4KookieKids]

4 hours ago, Moved On said:

 

4KookieKids, in case it wasn't clear by my previous comments, the above post was FYI for you.

Know, also, that their behavior at ages 8-10 will not be the same as 10-12 and later in the teen years. They are called developmental delays for a reason. Sometimes, however, when there are other labels in the mix or if anxiety kicks in as they get older and the responsibilities grow, new concerns can arise. But anxiety and anxiety meds are so common in the general population without ASD these days that it is not really alarming for people on the spectrum to also develop it, given certain challenges unique to ASD like SPD. Some will be able to deal with anxiety using CBT and mindfulness strategies, while others may need a combination of meds and strategies. Some may be lucky enough to have a good psych/ neuropsych that guides them through the process and makes recommendations, while others (like my family) have to educate themselves in order to find the best solutions to tackle whatever challenges come along. It is why I am teaching CBT and mindfulness strategies to my two boys. I'm hoping that if they become a part of life for them, they will always have them to help them through any challenges they may face.

I hope you find the best approach for your boy,

M

 

Thanks. I definitely didn't realize it was to me. ?

How do you go about educating yourself on these things to help your kids? I feel completely dependent on our psych. I happened to accidentally do a bunch of stuff recommended for ASD kids when he was younger, our psych at the time said, which is probably why I (and everyone else) underestimated the extent of his struggles. But lately I often feel helpless and like I have no idea how to help him. I hate driving around to all these therapies. I’m not anti-therapy, and he really likes his psych, and the OT is GREAT for him. But I also feel like 45 minutes with the psych twice a month (they are really over full, but all of them are in my area) just doesn’t even begin to cover the support we need. And HE is starting to feel it more and it’s affectig his perception of himself and his role in our family, because he feels like he’s always in trouble and all we do is fight (even when we’re not fighting and I’m just correcting something mild). I think that the sheer volume of correctionr/redirection we deal with makes even the insignificant things feel significant to him, so if I could somehow decrease the number of interactions we have that he perceived as negative, it would actually snowball, because he'd feel more at peace with things, and then the ones that really are small potatoes with not seem like big ones in his eyes. Maybe.

I’d love to have some better resources for teaching him and myself and my other kids mindfulness and cbt myself.

[Lecka]

Have you looked at Social Thinking?  I think it’s the top thing to look at if you haven’t been to their website.  

 

[Lecka]

Oh, two things to look at for self-regulation, on the Social Thinking website, are Zones of Regulation and the Incredible 5-Point Scale.

The Social Thinking materials would also be things to look at.

 

[Lecka]

For a place to start and get an idea about Social Thinking, you can look at Superflex.  

My son is 9 and currently doing We Thinkers Vol. 2, he is older than the recommended age for it, but it is the right level for him, so you can definitely look below suggested age ranges.  

[PeterPan]

1 hour ago, 4KookieKids said:

he feels like he’s always in trouble and all we do is fight (even when we’re not fighting and I’m just correcting something mild). I think that the sheer volume of correctionr/redirection we deal with makes even though insignificant things feel significant to him, so if I could somehow decrease the volume of interactions we have that he perceived as negative,

Oh foo, you already said you couldn't find a behaviorist/BCBA. Can you move? 

I think the challenge for me was realizing the extent to which he DID NOT GET cause effect, was not picking up on the consequences of his actions, and thus wasn't making inferences or modifying his behavior. In other words, everything you're told to do in good parenting is dependent on developmental principles that MIGHT NOT BE THERE to allow him to learn from those methodologies. So then you're asking how to back up and set instruction up in ways that he CAN learn from.

The staying calm (or not staying calm) part and the agitation when confronted means it's really super hard. My ds needs a very, very light touch with confrontation. Sometimes things need to be smoothed over and he needs to be confronted a couple days later, when he's more calm and ready to process. Sometimes he's going to need some sensory support, some vestibular input, a back massage, something like that going on to help him stay calm and be ready to process that (still light touch) conversation. He can only handle what he can handle. We can push that, but our demands are very high and expectations very high because the IQ is high. We have these SUPER HIGH expectations on where we want to get to, and sometimes their bodies aren't cooperating and getting them there. Sometimes we have to use strategies appropriate for someone much younger while we come alongside and gently help them get there.

Using the books right now is really interesting with my ds. It's letting us having conversations and explore topics in social thinking and emotions while being a little less threatening. We can walk right up to the brink and keep it gentle. It might be something to be doing on the weeks you don't have the psych appointments. Of course you could do more, but I'm just saying like bare minimum, you could try a *little*.

Yes, these kids eat up high quality interactions. My ds eats up all we'll give him right now. 

[Lecka]

If things are insignificant, you can also look at Ross Greene and a recommendation to only focus on the most important things, and letting some things go, to keep from having a negative pattern of interaction. 

There is some advice to have a 1:8 ratio of negative:positive interaction, so increasing positive interaction is also a strategy.  

There might also be other ways to provide correction like pointing or writing something down, sometimes it gets less of a reaction than saying things.  

[PeterPan]

1 hour ago, 4KookieKids said:

I’d love to have some better resources for teaching him and myself and my other kids mindfulness and cbt myself.

Just google body scan mindfulness and things will come up. If your library has books by Levine, his work on trauma will have (more complex but similar) exercises. For your kids go download Sitting Like a Frog. Christine Reeve has a helpful page on "meditation on the soles of the feet" which is a modified mindfulness strategy.

The challenge with mindfulness is you're tapping interoception. In other words, they might struggle on a lot of levels. It's worth doing, but it's tricky. You can modify the mindfulness work to take this into account. You can put a blanket over them, touch a part and have them name what you touched and put a scale 1-10 on how uncomfortable that spot feels. Or make a list of adjectives and help them choose from that list. If they're not hot at describing, then to combine the language task and the interoception and and might not go well. But you can support the components and get there slowly.

Anything you do that involves muscle work improves proprioception. And while not exactly the same, it's another way to get their motor speed up and then say ok, tell me how your feet feel, how do your heels feel, how do your arches feel, how do the tops feel, how do the toes feel. Or do heads or pulls or breathing or whatever. It ALL works. Any of it will work. And, unfortunately, more is more better, meaning it's just something to put time into. If you make some effort for 30 minutes yourself (take a long shower, let the shower head pulse on you, pay attention and do mindfulness to each spot and how it feels and put words or numbers to it), then you increase your own understanding of what should be happening, which will allow you to help them.

[Lecka]

https://www.amazon.com/gp/aw/d/006077939X/ref=cm_cr_arp_mb_bdcrb_top?ie=UTF8

This book is a classic for a reason.  The Explosive Child by Ross Greene.  

It’s not the most helpful thing for me, but is extremely good for many, and it’s great for doing the best thing for kids instead of trying to do some certain discipline for the sake of doing it.  It’s a different mindset.

Its hard to say, a lot of parents already do things like this, and then it’s not going to be as helpful, if you already agree with what he says.  

Still — it is very good.  

I think it’s good for preventing some preventable escalation, especially.  

But I don’t think everything is preventable, some things I think do have to have a response.  But not everything does.  

[PeterPan]

3 minutes ago, Lecka said:

If things are insignificant, you can also look at Ross Greene and a recommendation to only focus on the most important things, and letting some things go, to keep from having a negative pattern of interaction. 

The corollary to that is not to say it unless you mean it. And by mean it, it means I'm willing to get my butt up and actually go take his hand and make it happen. Our ABA stuff tells us levels of prompts and supports, and sometimes people need to be taken by the hand to get there. So I try not to say it unless I mean it, meaning I'm actually willing to get up, go there, and follow through with levels of support until it happens. If I'm not willing to follow through, then I try not to see what's happening.

[Lecka]

Yes.  Otherwise they learn to wait around until the parent escalates, a lot of the time.  

It is frustrating.  

[PeterPan]

9 minutes ago, Lecka said:

Yes.  Otherwise they learn to wait around until the parent escalates, a lot of the time.  

It is frustrating.  

Yup. If I delay, hollering out some order but not having set it up for success and not having a plan to follow through, then I'm making it worse. It takes a lot of self-discipline. I mean, I get TIRED. I'm at least as tired as the next person, and maybe more tired than some people. I will sometimes go to my room and assign him to someone else or explain to him his level of recognizance, just so the authority is clear. It's better to allow some bad behavior but have it clear he was doing it when you weren't around, rather than having him not comply.

On the flip side, you've heard of compliance drills, yes? Everyone has an opinion, and you can google them. All I know is they get us momentum, get us going in a positive direction, and help my ds remember who he is, what his place is, and how the world works. It's what grannies do to kids when they have them over and say let's make cookies. It can be very NATURAL and normal. Compliance drills, carefully implemented, help my ds snap back and be more connected and more responsive if he's slipping. We only have him most of the time, so he doesn't get natural reinforcement. If your ds tends to withdraw, he may benefit from compliance work. 

Fwiw, even when my ds withdraws or wants time alone, I try to make it connected. I thank him for telling me his plan, tell him that's cool but that we're going to do it x amount of time or till x thing and then we will xyz... I don't just let it go on, and I don't let it be like I'm climbing into a hole. That hole is the aut, and it's not good for him. When he descends into the aut, he's MUCH harder to snap back and get back and get on track. It's the very definition of autism, the AUT of autism. So I really have to watch my ds and make sure that his level of connection is solid, that he's not slipping into the aut. It's why I'm always looking for good interactions for him (with providers, whatever), because it's bringing him back from the aut. THAT is where it's at for us. When he's connected with us and engaged, he's amazing. That took time for me to figure out how to get control when he was withdrawing.

For us, it's dominoes. The compliance is better when he's connected, and the connected is better when he's not overwhelmed and... So that's where I'm saying I went back back back, and for us it all starts with that connection, coming out of the aut. If I have that, then we can get the rest.

[Lecka]

https://www.amazon.com/High-Functioning-Autism-Difficult-Moments-Practical/dp/1942197241/ref=mp_s_a_1_1?ie=UTF8&qid=1532630041&sr=8-1&pi=AC_SX236_SY340_QL65&keywords=brenda+smith+myles&dpPl=1&dpID=51fj0zpD4lL&ref=plSrch

I have heard good things about this book.  It’s not exactly aimed at my kids, so I don’t exactly know, but I have a very good impression.  

[4KookieKids]

Thanks for those resources! We do super flex and I read the explosive child a few months ago. That one was hard because the sheer number of issues that should be addressed was overwhelming to me.

Sorry, OP. I really wasn't trying to hijack the post... I was originally just intending to voice solidarity with the article regarding "mild" or "high functioning" autism... Though it's always so good for me to experience the support on this board. It's hard to find another place where folks really get that a gifted kid with disabilities might *seem* normal for a while... but that doesn't mean they're "normal."

[Lecka]

That is hard when there are a lot of issues to work on.

Sometimes improvement in one will provide some synergy, so that farther down on the list things are a little easier than the first thing was.

You are doing good things!

There’s a lot to wade through for autism.  

I’m sure you have asked this, but I would wonder if you could get more time with the therapist if a slot opens up?  Maybe it’s worth asking?  That is frustrating when something is helping but the time is limited.  

[Guest]

4KookieKids, I don't have time to read the other responses but I will try to answer the question you posed to me to the best of my ability. 

First off, I do not use most of the resources you see recommended on this board for many and various reasons. I won't be going into the reasons, as they are reasons that concern me and my unique way of thinking coupled with research on the background of these approaches. Yes, I do a lot of research before deciding what will work for my kids. Like many on this board when we first got the diagnoses I made some purchases recommended from people here that were not useful to me or suited my kids, and so I learned to follow my research and my gut. 

As for the resources I do use, I will not be recommending any. I do not want to see people making expensive purchases that may turn out not to be usable for them. This is my way of thinking though. I don't just look at my children. I put a lot of emphasis on family dynamics, family dynamics in my family and my husband's family growing up, and our cultural backgrounds. So, when I say I use CBT and mindfulness I am approaching it as a way of life for all of us. Anything I use with my kids is cognitive based, not just our CBT strategies. If you look into the Social Learning Theory by Albert Bandura you will find that kids in a family will model the behavior of those closest to them (this is a very oversimplified presentation used to make my point). So, if the parents' way of approaching disagreement is with the husband and wife screaming and shouting at each other, you bet, that is what you will see in the family and the kids will do it too. Certain reactions and ways of handling stress become patterns in families. It is why family dysfunction is so often talked about and you see so many people in therapy as adults. 

So, then, my approach has been to read many and various books on psychology, CBT, mindfulness... (still buying books and still reading), etc. I use the books to see what we need to work on. I have discussions with my husband on the strategies and I also use the strategies on myself and with my kids in order to model the approach. But, I am not the parent that you will see using scripted step-one, step-two type of resources. This is why I read up on the philosophies behind the therapies to see if they agree with my own common sense, thought process, and beliefs. Then I use them as tools and develop my own approach for each of my children and for my whole family. 

If you have not figured it out so far, it really depends on the type of person you are and what works best for you ? Some people cannot do what I do, but, I cannot follow how they approach things either. It's just the way I am ?

[Lawyer&Mom]

I have no experience with ABA, but a a guided social group sounds like a good idea.  I would have benefited from something like that as an autistic teenager.  In my experience, other group activities, not specifically focused on autistic kids, were also helpful for me.  Summer theater daycamp, swim team, after school journalism, youth leadership group... Anything where we had a common activity and a more intimate group than at school was good practice for me to socialize in a group that had a chance to get to know me.  It also gave me a social opportunities without having to make plans with people.  (Still not great at that.)

I would focus on social, but it doesn’t have to be just autism based social activities. 

[Guest]

4KookieKids, one book I would like to suggest to you and to Bethben is, Uniquely Human by Barry Prizant.

[Guest]

4KookieKids, I don't mean to sound callous. I can assure you that I'm not. I am an older mom, older than many of the moms on this board, and life experience has taught me to keep certain things to myself. I'm an introvert and a fixer/ problem solver, this means that I work mostly on my own or with my best friend (my hubby), and I don't dwell too long on the thinking/ worrying. I pray for guidance and wisdom and I move on to problem solving. Everyone is different and we all react differently. You coming here and sharing your concerns about your child, is not at all the same thing as the article that was linked early on in this thread. That mom was not seeking help, she was making a statement to the Washington Post audience and to the world. Not the same thing!

Also, what I was trying to explain to you is that we all approach things differently. Many of my resources are psych texts and CBT resources written for clinicians. I had to go that route because the typical CBT type resources were not meeting my needs. So I read and make sense from professional resources, not something I would recommend to anyone else. I would encourage you though, if you are interested in CBT and mindfulness, to look at resources that are available out there (you can usually see previews on Amazon or Google books) and decide what you feel you can work with and what will fit your child(ren). Remember that your style is just as important as what will work for them. I put focus on my teaching style, not just for therapy materials, but also for curricula. I often use curricula in combination. Remember what I said about modelling? I was lucky enough to have had several teachers that inspired me in my life. One of these teachers was our History/ Lit Study/ LA teacher. She made us think. Her style of teaching has inspired the way I approach my kids and the way I teach them.

So that is a small part of my story in a nutshell and why I approach things the way that I do.