Need help understanding how to help child's behavior

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We have a loving, wonderful, intelligent 5.5. year old who happens to be autistic. His speech is limited to learned rote sentences ( applied correctly) and various scripts and echolalia. His receptive skills are better then his spoken language and he often surprises us by what he has heard and retained. He just started a very supportive structured program KG where he appears to be doing well with lots of structure and visual supports.

He has a possible commorbid anxiety issue. Most of the time it will be a lot of verbal reassurance seeking, making sure what we will do next etc. We understand this need and attempt to address it with lots of visual supports etc. Most recently though he has developed an off physical compulsion where he will swipe his feet over a surface he just walked on and/or back track over his steps. He does not appear to be agitated when doing this, although we have only noticed it developing very recently and it would be understandable that he is exhausted from a fuller day at KG.

It has been suggested to us that it is another facet of his anxiety and that we should consider a trial of SSRI's.

I would love to hear from autistic adults, if they have any advice for us.

FanBoy11

"Commorbid", "compulsion" wouldn't be the terms I use. I would say he is a child being a child.

- Have you walked/swiped and traced his steps with him?
- Reading is important. How well does he read? Can he type on computers, can he text? Does he draw pictures?
- Do you draw pictures for him? Do it every day. Do it every night before sleeping. Get a magnetic drawing board. Draw as you talk, talk as you draw. Use speech bubbles.
- If he is receptive to you playing with him on swiping feet and backtracking, then use it as opportunity to teach him to read words/sentences, or solve arithmetic problems. Write things down on blank index cards.
- Does he like elevators?

Drugs are a wrong path. Development of skills, establishing more connections inside the brain of your son should be the only thing you need to worry about. Behavioral issues should not be your focus. Autistic children are perfectly fine the way they are. They are not sick. We are. More and more people are realizing that autism is not an illness/disorder. Autism is a child being a child. You develop these children, all other issues are gone, by themselves. You worry about behavioral issues and start the down the path of drugs and treatments, you may end up ruining your child's life and probably your own life. Your choice.

Anxiety is not an autistic issue. 1 out 4 adults in the USA has taken anxiety drug in the last 10 years, the absolute majority of them are neurotypical. There are other ways of dealing with anxiety (eliminating it) when kids get into teenage years, without drugs. Anxiety happens because of disconnection of information. You connect the good experiences to your bad experiences, and look at things from a bigger picture, and you can deal with anxiety much better. These are the kinds of things that have been known for thousands of years. And back then they did not have anxiety drugs.

idk, messing up a good child with medication?
what is communicated by that, that he's not alright?
take a good look at your own developement as a child and do not settle with what's handy for educators,
i like eikonabridge's advise, stay calm and validate your kid, don't let others ruin your confidence in him.

Perhaps I did not use appropriate language so I will try to spell it out better: we love our child, we are not trying to change our child. We do not look at his autism as something that needs fixing, we are worried that his anxiety is getting in the way of him being able to function fully and we are trying to understand ALL options that the available to help him feel less stressed. We have never tried to hamper his stimming- this is not a stim. It does not seem to make him feel any better after he's done it, he does not seem to be happy doing it. As a parent, when you see your child struggle with something all day, every day, it is normal to want to try to alleviate that. I only said that medication was suggested, not that we had started it. If it comes to that, it will be a very difficult decision to make and certainly not one we would make lightly. There are many ways in which his intense anxiety displays it self that are heart breaking and I obviously could not mention them all. He is not able to make social connections because he is often to anxious to be in social situations. We have tried various non medical therapies to no effect. He is too young and not "verbal" enough for CBT

To answer the questions:
-yes we have traced his steps with him, he does not appear to notice
-he can read a few sight words- he can not type,text or draw pictures
- we draw all the time and we use pecs and the ipad and a million other visuals
- yes he likes elevators


My question was really directed at autistic adults, to see if they could shed light on what purpose the foot swiping might serve so that I may understand it better.

I believe both of the people who posted are autistic, so they posted as you requested if perhaps not how you were hoping. That said, if you were primarily hoping for autistic adults to post maybe a moderator can find a better place for this post, if you like. (You can flag a moderator, if you want to)

The posters here are an array of neurotypes b/c sometimes there are parenting issues autistic people want to post on, but more often it is parents of autistic kids who may be NT or Autistic, something in between, or something else.

I am unofficially diagnosed, so I don't know if that is autistic enough for what you want to know. I don't think the foot swiping thing is a universal autistic trait. There me be some who have done it, or something similar who can give you insight into it. To me it looks OCD, but it could be anything --- even just that he is playing a fun mental game where he needs to wipe away his foot prints for some reason. Given that fantasy can be repetitive, it would not be weird to see him do it often. It is not unusual for an autistic person to play the same game of pretend over and over.

If you think there are additional indicators for OCD, then that would point more towards that theory.

Thank you so much for your response. I am new to navigating the forum and I appreciate all the responses. I in no way meant to offend anyone so I apologize if anything I said was inappropriate.

Many autistics, me included, like advance warning of things and events. In itself it isn't an anxiety issue but rather a way to avoid the anxiety that would otherwise be created by being plunged into unexpected situations.

This is a double post. OP, please refrain from posting the same thing twice in different areas. Those are the rules of this board. It splits the conversation and it confuses people.

No worries. This sub-board can be especially confusing.

Short answer: butterfly effect.

You can google for that. Let me elaborate. First, for fun, watch this video clip from Jurassic Park. It captures the essence of the "Chaos Theory."
https://youtu.be/n-mpifTiPV4


Now look at this picture from Wikipedia: https://en.wikipedia.org/wiki/Dew

You see some spots on the leaf with big water droplets, some other spots are dry. Actually, when the dew started to form on the leaf, there were gazillions of tiny droplets distributed uniformly over the leaf. (That's the case of the neurotypical brain.) But as the size of these tiny droplets grew, they coalesced into larger and larger droplets, kind of sucking away the smaller droplets from some spots to form fewer but bigger droplets.

The leaf is the brain of your child. The dry spots represent the inability of these children to pay attention, to talk, and to socialize. The location of the large droplets is the attention focus of your child. It's chaotic in nature. No one can predict what kinds of stims each autistic child may develop. No one can predict what specific sensory issues each autistic child may have. In other words, it's hopeless, and useless, to ask the WHY question. Trust me, autism was discovered 73 years ago. There is no need to repeat the mistake of millions of parents out there that have ruined their children's lives in these 73 years. The same question you have asked, has been asked a gazillion times before. If there was a magically simple answer, Google would have already told you. Philosophizing on the purpose of stimming behaviors or the why of sensory issues is a waste of time. A time that you could better spend on developing your child.

Instead, you should ask the WHAT question: what can you teach your child now that you know what he likes? What happy events/experiences could you leverage to gradually introduce sensory stimuli to your child?

The autistic brain is a powerful brain. When you develop the brains of these children correctly, they will shine with their ability to perform deep thinking skills beyond what neurotypical children can possibly achieve. How do you route their attention from those big droplets to the dry spots? That's called the "modulation" technique.

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Look up DieselDucy elevator videos on YouTube. Take your son to elevator rides. Buy elevator toys for him. Get building blocks so he could build elevators himself.

Frankly, it does not need to be elevator. Any other object/activity your son likes would do, too. (I have also used vacuum cleaners to teach tons of skills to my son.)

You wonder what elevators (or other stim activities/objects) can do? Well, my son learned to assemble building blocks, to draw, to write, to type, to talk, to do math, to write simple computer programs, to assemble complicated electronic circuits, to eliminate some of his sensory/rigidity issues, and now, to initiate conversation and talk to strangers, all from his passion with elevators. Basically, he learned all the skills he'll ever need to learn, from elevators. Here is a video I made to teach him addition, by using an elevator that he has made. (How many of this type of video clips have you ever made for your son? Ha! Need I guess? Granted, I am autistic, so I don't mind focusing on certain things.)

https://youtu.be/VxIJAxlsfYY


One of his first longer sentences was: "the toilet is a Gerber." He picked it up from one of DieselDucy's video clips. After that, I grabbed a Sharpie marker and started to label our blank toilet seats as Gerber, Kohler, etc. Yeah, my son made me learn about toilet brands.

We took our children to Vancouver for vacation not long ago. We visited the Grouse Mountain and rode its sky ride (cable car). On the first day, my son was refusing to get on it. He was old enough (6 years of age) that we decided he needed and could benefit from that experience. One trip up, one trip down. Told him that it was just like an elevator. Shot some video clips. Had a chance to watch a helicopter taking off. Made up some stories with him about his friend the Black Cow and her 5 babies. (Vancouver comes from Dutch words van + coe + vorden, meaning "from the place where cows cross the river.") Toward the end of our vacation, we went up one more time, and he was really excited about it. Sure, it cost us an arm and a leg, but it was well worth it.

Verbalization and socialization are the things autistic children *least* need to develop. The wiring for their verbal skills and social skills is all there, intact, in their brains.

You develop the foundational visual-manual skills of these children, verbal and social skills come later, for free.

My son now plays with his 2-year-old baby cousin, and even tries to teach his baby cousin to read by preparing video clips himself. Inability to socialize!? Yeah right... Those autism "experts" have been wrong for 73 years.

Kids are fine. Adults are the problem. It's a different species (or subspecies) of fine human beings. They have their own way of growing up. We shouldn't turn their life upside-down. Seriously, more and more, and more people are arriving at the conclusion that autism is not a disorder. Some have explicitly called for it to be removed from the DSM (the diagnostic manual of mental disorders).

Sure, these kids nowadays need extra help, but that's because our society is not set up to educate these kids. They have a different way of growing up. They are merely a tiny fraction of the general population: there is no economy of scale with our current infrastructure. However, with more and more modern technology, it's possible to gather these kids together, including via video conferencing, so that they could thrive in school environment. My point is, once the infrastructure is set up, teaching these kids won't cost more than teaching neurotypical kids. Autism is an educational issue, not a medical issue.

Short answer: butterfly effect.

Thank you so much for this post. We have learned so much and are also looking at your website. I am going to stop commenting on this thread though as there was a duplication issue with my post and I don't want to confuse anyone else.
Again, for taking so much time to respond, THANK You!
MZ

http://www.autism.org.uk/about/behaviou ... tines.aspx



I can relate to your child, having exhibited similar types of behaviour when I was younger. My ritualistic behaviours were part stress relief, part stimulation and enjoyment. Whilst they might be a sign of underlying stress, I think it's far more appropriate to try and teach him how to cope with stress (or indeed allow him to develop his own methods) than to alter his brain chemistry at such a young age - especially considering some of the side-effects. Not that I'm knocking SSRIs; I just wouldn't be too eager to give them to a pre-teen.

When he gets older he may be better able to communicate his needs to you, and you can revisit the idea?

Thank you so much for this- medication is not something we are seriously considering but I appreciate that you are not discounting them all together. Yes, he is only 5.5 so hopefully as communication increases, we will have more ways to assist with the stress!

I would love to hear from autistic adults, if they have any advice for us.

I was drugged with 60mg of Dexadrine during the day and 500mg of Placidyl (the original “reds" as in the Grateful Dead song) at night in the 1960s. Today even the most enthusiastic advocate of pharmaceuticals would call that regime excessive.

All these years later, I would say that pharmaceuticals might be held in reserve as a survival option if things get bad. Prior to that there are a number of herbal and supplement options that are less heavy handed that might prove even more effective. My son has done well with a low dose of sam-e. One thing about herbs is that a bad experimental choice usually results in no effect rather than some of the bad side-effects one can get with pharmaceuticals.

I think you will find a lot of neurological variation in this arena. OCD does frequently arise but not always to a debilitating extent.

Your son may not have yet reached the age where even herbal experimentation is warranted. There was a husband and wife team called the Moores that both had doctorates in education long enough ago when that had more meaning than it does today. They had done a lot of research and showed that boys in particular were often delayed in language skills. Their research showed that pushing boys into what was considered age appropriate development was actually harmful and that waiting until their skills developed allowed for more full development of these skills.

We homeschooled our children. We found a lot of parents worried about getting the right curriculum or making sure that their children keep up with public school children. We found that most of this worry is groundless. Bright children learn more and dim ones learn less. It doesn’t much matter what curriculum or teaching method is used.

We found it was much better to focus on a joy of learning and that is often better done outside of a classroom. Regardless if the child is bright or dim, the joy of learning can enrich someone over their entire life.

I would advise against putting too much stock in so-called experts. It is best to find out what you can for yourselves. The effects of too much or too little of dopamine, serotonin, methylation, and other neurological processes as well as learning about the experiences of others can help you make much better decisions.

Minor quibble: With reference to homeschooling, if you choose that option, depending on the kid, it can matter what materials you pick b/c often with autistic kids in particular, the delivery system matters. I never pick anything remotely expensive until I am convinced my son will take to it. The material has to be visually appealing to him, even in his best subjects, and his less favored subjects usually need some sort of humor or something interjected. Whatever you get will often need to be custom fit for special interests etc, but the extra work can be minimized, with the right materials. There have been tons of materials I loved, that I knew were a poor fit for my son, so I reluctantly got something else.

You also need to be honest with yourself about what level the work is appropriate, how much you can realistically assign without it becoming counterproductive. You may also need or want to switch materials on the fly. Luckily the science curriculum we have used and which my son used before, was on sale over the summer, so we stocked up on the entire middle school set of books. I was going to do earth science this year, but I decided at the last minute to swap it out for the chemistry because it turned out this year he happens to have a special interest in it.

YMMV is generally a good rule to go by and it is best to be as flexible as you can when raising an autistic child.