high functioning autistic... and how you dealt - Mothering Forums

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#1 of 19 Old 03-30-2015, 04:57 AM - Thread Starter
 
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high functioning autistic... and how you dealt

Hi all...
I'm not in a good place right now...

My oldest (9) was diagnosed with high functioning autism last july. (His real issues are very low frustration tolerance, raging tantrums, anger issues, and he's not easily compliant (I don't like that last description, but I can't think of how else to describe it. ex: He doesn't like church (non-negotiable for me that he go and always has been) and instead of just going along and getting the HOUR over, it tends to start raging tantrums... even though he KNOWS he's going to go ...EVERY week...

I've suspected something was off with him for a long time... but I've never treated him differently (unless he's having a fit... and I do tread carefully when I see them coming) ... but, I haven't changed how I parent/what we do... etc. Do I need to? Should I be making changes? How do you draw the line between what is autism and what is bad behavior and how do you cope appropriately?

He looks and acts completely "normal" 95% of the time... my parents don't believe me about his diagnosis and just think better discipline is needed... and I completely understand why they don't get it (it wasn't a think back when they had kids, etc.)... but I don't know where we go from here... (I don't want HIM to think he's a label, and he can't do/isn't good enough because he's got a label... that is unacceptable to me... but am i thinking about it the wrong way? I don't think I've ever really processed/accepted the label myself........

thanks!!
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#2 of 19 Old 03-30-2015, 05:08 AM
 
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Not much advice here, except to say that I *hated* going to church growing up--my parents forced me to go every week, plus all those extra holy days, and it drove a huge wedge between my mother and I that lasted through my teenaged years. I really REALLY feel strongly about not forcing religious beliefs on other people.

That said, your son is still pretty young. I think that I would require a mature discussion about *why* he doesn't want to go, and what he would do instead, etc, before I'd just give in to that. (As an aside, I am terribly sensitive to incense, and didn't realize it at first, I would feel very sick and like I would pass out at church, so I'm sure that didn't help)

Do you have any other examples? I mean, is church the biggest issue, or did you just happen to pick that one? How is he with school (assuming he goes, and isn't homeschooled)?

Not to pick on you mama, and I know how hard it is to have a child like that--my stepdaughter was very much like that at that age, and I remember feeling as though I had no tools left in my toolbox to deal with her!

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#3 of 19 Old 03-30-2015, 04:23 PM - Thread Starter
 
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The church example is just the most recent/freshest in mind... it could just as easily have been me requiring him to wear jeans/button shirts, math homework, his brother drinking out of the sponge bob (or whatever one he decides is his that day) cup, etc... He goes to school (this is his first year after homeschooling) and he has issues there, but nothing like what happens at home. And, he's always had these issues...but they've definitely escalated since starting school...

I am of two minds here... One is to accept that this is part of who he is and believe that he cannot help it. I am trying to get him into therapy but the therapist that accepts our insurance and actually put us in her schedule keeps cancelling/no showing... The other is that he's playing me to get out of something he doesn't want to do or punishing me for forcing him to do something he doesn't like.... I don't want to think that or believe it, but part of me is thinking that he's starting to learn that fits get him out of stuff... I KNOW he needs more tools in his toolbox to deal with stuff whichever way it is...
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#4 of 19 Old 03-30-2015, 04:51 PM
 
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Oh mama I am so sorry for your struggles, it is so difficult when it's your little one, and you don't know what is the right thing. It sounds like you are doing great if 95% of the time things are fine.
I cannot enough recommend the book The Explosive Child by Dr. Ross Greene. It saved my youngest, and probably me. It is caring and compassionate way of solving problems, and helps with understanding what the real problems are. His principle starts with 'Kids do well if they can'
and if they aren't doing well, adults need to help them
Good luck
Got to go it's milkshake time
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#5 of 19 Old 03-30-2015, 07:03 PM
 
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Your parents either suppoort you or they stay away IMO. You don't need that extra stress. Just keep your spirits high. Your child feeds off of your emotions and that can help or hurt the mood. I hope you find peace in what God has given you. It only makes you stronger.

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#6 of 19 Old 04-01-2015, 03:43 AM - Thread Starter
 
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Annaintoronto ....THANK YOU THANK YOU THANK YOU

I've either seen, read, or heard of this book before...it sounds so familiar... (I have a habit of reaching a new bottom, getting a ton of books, skimming them and not really committing to just one...). But, i went to the library...got that book and committed to reading it cover to cover before i touched another one... I'm only on about page 40, but he GETS my child! I NEEDED to hear his words... I don't know if it will work... but i just really needed this book right now...so thank you...
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#7 of 19 Old 04-02-2015, 11:33 AM - Thread Starter
 
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I finished that book in a day and a half... I'm trying to start using it, but I'm not quite sure I get it... the only problem I really can't figure out... he's good at agreeing to do things the next time he gets mad, but then he doesn't follow through. I know Dr Greene says that means the solution was not mutually agreeable/durable and go back to plan b... but what if thats ALL we do is endlessly churn out ideas and nothing ever solves??? (Or, are the solutions supposed to be for the situation BEFORE it escalates into where I need him to calm himself down? )

wish me luck
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#8 of 19 Old 04-03-2015, 12:46 AM
 
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My son just turned 8 and was diagnosed as high functioning Autistic approximately 4 months ago. We have the exact same problems. Quick to anger, low tolerance for frustration, just as you listed. We have our son on a homeopathic remedy called Thuja, which was given by his Homeopath. It's worked wonders for his frustration levels.

My son finds it hard to sit still, especially during something he doesn't find interesting, which is why you may be facing challenges with church time. It could be anything from the hard surface of the seat which causes annoyance which leads to frustration, to the pitch or volume of the singing, which would drive my son completely up the wall. Autism often co-exists with things like sensory issues and anxiety, and maybe your son can't even express what it is about church that he doesn't like. It could be many things that lead to his annoyance or even fear of the situation (my son is scared of loud noises and singing). Forcing him to endure church when there is the very real possibility that is it causing him anger/fear/pain is not going to help. This is also the reason my son is exempt from homework. It causes too much anxiety and we were having meltdowns with screaming and crying and trying to destroy the room. It wasn't because he was a brat who didn't want to do homework, it was that trying to do the work in a home setting instead of school made him confused and upset. It was simply wrong for him to be doing it at home. Seemed weird to us as we couldn't understand why that would make someone upset, but it caused him great anxiety to be doing homework outside of a school setting. He just couldn't get past it.

You cannot discipline an Autistic child as you would a neuro-typical child as they simply do not understand or learn from the punishments. I agree that there is a fine line of understanding what behaviours are Autism related that he simply cannot help, or him just breaking a rule because he feels like it. We have found success in letting our son know what behaviour we expect ie: Good listening in school today and you can have ice cream after dinner. If not, there's no reward. It motivates him and still lets him be in control, as loss of control is extremely frustrating for him, and we are not asking him to do anything that he can't do or hates to do. I let him pick shirts he likes as he refused to wear certain kinds (he hates the feel of collars on his neck). He picks awful shirts that I can't stand, but he wears them happily because we gave him control over something.

My old church used to have a separate room for young children/babies to go when they were crying or needed time away from the group. Is there somewhere like that your son could sit and play while you attend the sermon? Is there a compromise that you would accept?

My son's behavviour escalated once he started school too. Does your child have an aide in class? Ours have been instrumental in helping our son deal with anger and frustration, and along with the homeopathy we have gone from 3-4 meltdowns a week to 2-3 a month.

If I may share something the Psychologist said regarding discipline and tantrums. When your son is calm, he is able to make these promises regarding 'the next time I get mad' but when the anger comes, it is literally impossible for him to control himself. He cannot remember his calming tools, he cannot reason, he cannot snap out of it, he simply has to release his anger and "rage it out". He is unreachable during this time as you may have experienced already. The trick is to catch him before he goes too far and try to turn him off the path. We read a book, offer a juice, use a 'breathing ball', count to 20 while doing deep breaths, anything to head it off. As I said we have gone from tantrums all week to barely any all month. It took us 2 years to get there with a LOT of help, but we are seeing success. The school has been instrumental in helping him by offering breaks during class, incentives for good behaviour or for completing a worksheet or finishing a task he didn't really want to do. We could not have done this alone.

Forgive my rambling. I hope it has been of some interest to you. I wish you success in helping your son.
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#9 of 19 Old 04-04-2015, 03:39 AM - Thread Starter
 
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mylittletiger - Your rambling IS very helpful...I'm going to look up that homeopathy thing... I'm also looking into essential oils because someone mentioned that those can help (irl) ... But, have you ever found anything useful for in the moment of a tantrum? (I'm actually printing out what your psych said and posting it... because I often forget that part... ) The tantrums for us don't seem to be going anywhere, and nothing I suggest seems to work as far as channeling it into something safe... I literally hold him while he rages so he doesn't hurt himself/anything else. The only room I could make even remotely safe here would be a tiny bathroom..which has a mirror on the wall and running water so I'm not sure if thats a good idea (but nothing he could throw/move... I would worry about him punching the mirror though)

He's in an inclusion class - there are 2 full time, 1 part time teacher in the room... And he gets a lot of help... they are doing the best they can... he has had tantrums at school, but nothing to the degree he has here...there its usually crumpling/throwing papers or hiding under desks...
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#10 of 19 Old 04-04-2015, 06:06 PM
 
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Crazy town mama, how's it going?
I'm so so so happy you read the book

In the beginning, we just empathy stepped, empathy stepped, empathy stepped, very little solving, all getting to the problem, the real problem. It is such a new way of dealing with kids that it actually does have a learning curve, for kids and parents. We found that he didn't even know the real problem, and I still didn't know how much observation was necessary.
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#11 of 19 Old 04-04-2015, 06:19 PM
 
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" It could be anything from the hard surface of the seat which causes annoyance which leads to frustration, to the pitch or volume of the singing, which would drive my son completely up the wall. Autism often co-exists with things like sensory issues and anxiety, and maybe your son can't even express what it is about church that he doesn't like. It could be many things that lead to his annoyance or even fear of the situation (my son is scared of loud noises and singing). Forcing him to endure church when there is the very real possibility that is it causing him anger/fear/pain is not going to help."
Yup! And he wouldn't even realize it to ask for help.

"If I may share something the Psychologist said regarding discipline and tantrums. When your son is calm, he is able to make these promises regarding 'the next time I get mad' but when the anger comes, it is literally impossible for him to control himself. He cannot remember his calming tools, he cannot reason, he cannot snap out of it, he simply has to release his anger and "rage it out". He is unreachable during this time as you may have experienced already. The trick is to catch him before he goes too far and try to turn him off the path."

If you know what the unsolved problem causing the meltdown is, there is no meltdown.
Rule 1 " don't talk to the disregulated kid"
Rule 1a: defuse, de-escalate, keep everybody safe.

I know a lot of people use rewards, but I have found success is it's own reward, and when you ask kids to do things they are capable of, they happily do it, and, push their own limits, and self challenge.
Take care
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#12 of 19 Old 04-05-2015, 12:45 AM
 
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Quote:
Originally Posted by crazytownmama View Post
But, have you ever found anything useful for in the moment of a tantrum? (I'm actually printing out what your psych said and posting it... because I often forget that part... ) The tantrums for us don't seem to be going anywhere, and nothing I suggest seems to work as far as channeling it into something safe... I literally hold him while he rages so he doesn't hurt himself/anything else. The only room I could make even remotely safe here would be a tiny bathroom..which has a mirror on the wall and running water so I'm not sure if thats a good idea (but nothing he could throw/move... I would worry about him punching the mirror though).

Will he hurt himself if you left him alone in his room? My son has broken the blinds in his room twice, and torn some of his posters down (which he deeply regretted afterwards, so much so that he cried for half an hour) as well as thrown some toys around, but nothing that would injure him. If I tried to hold him during a tantrum he went even more berserk. For my son, being left alone and ignored during the tantrum was key. Afterwards, when he was calm, we'd talk about what set him off and we'd practice taking 10 deep breaths when he was upset. As the months went by he was able to do this by himself, though it was very hit and miss if he could actually breathe that way when he was mad. For the most part, we'd just let him have his tantrum in his room. We took all his posters down and told him that he couldn't be trusted not to ruin them, and when he could go a month without destroying anything during a tantrum, he would get them back.

We did ask the Psychologist about a punching bag for our son that he could have at when he was having a tantrum. He told us that you should ONLY use a punching bag IF the child is already violent, and only with the understanding that as the child learned to deal with the anger without violence the bag would one day be taken away.

Now, on the rare occasion when my son has a tantrum, he's ignored, and when he's done and comes out to the living room, I act as if nothing has happened. He's gotten out his anger and frustration in a safe place and I don't bug him about it afterwards. He's at the point now where he'll come out and apologize for his behaviour and go on with his day.

I do have to say though, that this Thuja homeopathic stuff really has been a saving grace for us. I had no understanding of the practice until we were faced with medicating our son with something that had serious side effects. Homeopathy was our last ditch effort to avoid the medication. At our pediatrician visit last week she actually told us that she no longer recommended any medication for him as he was doing so well! I know many people don't believe in homeopathy, but for us it really did make a difference.

For our son, most of the time his tantrums are regarding things such as having to go out, such as grocery shopping, something he's not able to avoid. We try to prepare him starting from the moment he gets up and reminding him every hour until an hour before we go, then every 10 minutes until it's time to get dressed. Last year we would have to forcibly dress him and drag him from the house to the car (and lock him into his car seat using a device or he'd unlock himself and be free in the car), with him screaming the entire time. Now we get some foot stomping and whining, but he does what he's told. As I said before, it's been a very long road but it does get better. It's such a dark place to be for the whole family, and I very much hope you don't have to spend too much time in the darkness before you start to come out into the light.

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#13 of 19 Old 04-05-2015, 08:02 AM
 
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Could you tell us more about the Thuja homeopathic remedy you are using? thanks. ((any links?))
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#14 of 19 Old 04-05-2015, 10:01 AM
 
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Could you tell us more about the Thuja homeopathic remedy you are using? thanks. ((any links?))
I wish I could give more information regarding the Thuja, Chalex, I really do! When I asked the Homeopath about it she told me it's from the Thuja tree. Here's some information on that:

Thuja is the name of a genus of evergreen tree native to North America. It is in the cypress family, and often goes by the name “white cedar.” The homeopathic remedy that carries the “thuja” name is usually made from the twigs and needles of that tree. Sometimes these are brewed fresh into a tea or other medicinal tincture, or they might be ground or extracted chemically and put into pill or capsule form.
Native Americans in the United States and in Canada are thought to have been the first to use extracts from this tree to help improve health and relieve the symptoms of many different illnesses, including coughing, menstrual problems, malaria, and headaches. When settlers came from Europe, they began to utilize the medicinal properties of the white cedar as well.


Here's a link with other Homeopathic remedies for Autism. I'll be asking about these at our next visit: http://www.naturalhealth365.com/auti.../remedies.html


When googling the Thuja, I did come up with a LOT of links that were just so strange to me, talking about life trees and the colour of a person's life force, things I cannot understand and might even be a little skeptical of. All I can say is that the Thuja specifically is working for our son. I would recommend seeing a well known and licensed Homeopath for any prescriptive remedy, however, as it seems you can order these things off the internet without talking to anyone who understands them.


Homeopathy is such a misunderstood practice, and I'll admit I have a very limited knowledge and understanding of it.
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#15 of 19 Old 04-05-2015, 11:21 AM
 
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are the clothes he's required to wear to church different than the clothes he wears the rest of the time? The problems there could be related to sensory issues with clothing.


Quote:
Originally Posted by crazytownmama View Post
How do you draw the line between what is autism and what is bad behavior and how do you cope appropriately?
.... (I don't want HIM to think he's a label, and he can't do/isn't good enough because he's got a label... that is unacceptable to me... but am i thinking about it the wrong way? I don't think I've ever really processed/accepted the label myself........

thanks!!

I've been following the thread and trying to think of something helpful to say. I have a DD with autism, but the patterns for behavior tend to be different for girls than boys and I'm not sure how helpful I can be with the specifics of what you are going through.


It is hard to draw the line between bad behavior and autism. I think it can be helpful to remember that even if the behavior is related to autism, that doesn't mean that it gets to go unchecked forever, just that a different approach might be more effective, that progress will be slower, and that the goal may need to be a little different.


For example, if it's just a bad behavior, then pretty standard parenting should work to change the behavior to an acceptable behavior in a reasonable amount of time.


But if it is an autism related behavior, more time will need to be taken to figure the real cause of the problem for the child, to set a goal that is a step up but attainable for the child and more acceptable to the parent (and others), the tools used to get to the new behavior may be different, and the time taken to get there may be longer.


Either way, if a behavior isn't OK, it isn't OK. Kids don't get a pass on anti-social behavior because they have special needs. EVERY kid can take a step in the right direction. That step just looks very different for different kids.



My DD knows she is on the autism spectrum, and that she thinks and processes differently than others. She also really likes herself. If you haven't read any Temple Grandin yet, I recommend it. it really helped me understand how my DD thinks, and it gave me ways to talk to her about what was going for her. We talk in terms of figuring out what works for her, not in terms of what she can and can't do.


One thing that is super helpful to my DD that hasn't been mentioned yet is sensory diet. For her, when her sensory needs are met, she's much more together. Does your son see an Occupational therapist or have your worked on sensory issues yet?


Also, my DD found a lot of things really overwhelming for a long time. Noise cancelling headphones and music she liked got us through A LOT of situations. Your son going to church with no drama and acting like everyone else isn't a reasonable goal right now. I think its time to consider what you could live with. Could you live with him wearing noise cancelling headphones during church? Could you live with him sitting on the floor and using the pew like a desk and drawing during church? Right now, let go of what you really want, and start trying to figure out a middle path that might work for your son and that you can live with. Getting away from the meltdowns is really more important than anything else. Besides being very maladaptive, they are hard on your son and on you. Figuring out an option, any option, that keeps him from completely spinning out is the first step.


My DD's meltdowns were situations in which she could hurt herself because she banged her head into walls, tables etc extremely hard, over and over, as if in a trance. She had to be restrained. I have very thick skin about people seeing what my child, who could appear "normal" to people who don't know her, was doing in certain situations, such as wearing noise cancelling headphones.


As far as how much to change how you parent, I had to change a lot of things. I had to make sure my DD's sensory needs were met, and at times it seemed like my life kinda revolved around that. I also had to trouble shoot what was going wrong for her in different situations and then address them. My DD has a lot of sensory issues around clothes and finding clothes that work for her and look "normal" for her age was a huge deal for a long time. She didn't wear jeans until she was 18 and could get womens relaxed fit jeans with stretch fabric.


The one place I was a stickler was on stuff that affected her sister. She didn't get to boss her sister around because she had special needs. I didn't feel that would be healthy for either of them. So with a special cup, I would get another so it wasn't an issue, get rid of it so it isn't an issue, or create a system so it is shared evenly with no one getting to dictate. But I would find a way to put a stop to the dynamic without her melting down. (also, she never forgets anything, so getting rid of something she liked and hoping she would just forget about it wasn't an option).

but everything has pros and cons  shrug.gif

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Right now, let go of what you really want, and start trying to figure out a middle path that might work for your son and that you can live with. Getting away from the meltdowns is really more important than anything else. Besides being very maladaptive, they are hard on your son and on you. Figuring out an option, any option, that keeps him from completely spinning out is the first step.



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#17 of 19 Old 04-15-2015, 04:53 PM
 
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Thank you for posting

So glad I came across this, it gave me lots of helpful ideas. I was called into school today (again) because my 8 year old son (PDD NOS diagnosis) was refusing to do his work. He actually said "No I am not going to do this." I was able to use some of these ideas/points today when the administrators nabbed me.

It looks like you have lots of good advice and ideas here, I'm just lurking but I wanted to let you know that I am here and experiencing lots of the same frustrations. Sensory, anxiety, behavioral issues affecting daily functions, particularly now that I am also a single parent. We just have to be able to go to the grocery store without creating a three ring circus.

I pretty much gave up on the gym and church when DS was an infant because with any change in scenery or contact with someone other than me he would scream and cry to the point of turning red and choking. The flustered nursery workers brought him back every time. Continues as a toddler..PreK they would detach him from my leg and drag him in. K he refused to talk to the teacher- selective mutism. Mid-1st he started behavioral issues and work refusal. Thousands of dollars and hundreds of hours later we have a PDD NOS diagnosis mid-3rd grade. Church is still a toughie, as is the grocery store. OP who said do what works is kind of what I am trying for. Its not ideal or what I would want (its not fair!) but its adapting to survive.

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#18 of 19 Old 04-20-2015, 05:25 PM
 
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Does he use a visual schedule? My middle ASD HF son has many of the same behavioral challenges. Some of the disregulation and tantrums went away when we provided him with a visual schedule. Something about having a written schedule...knowing what was to occur next helped reduce/ eliminate his anxiety and we had smoother transitions between activities. For church, we even listed the clothes he wore "church clothes" and said he had sunday school from 8:30 to 9:45 and church from 10-11. We allowed him to take breaks during certain parts of the classes and services and eventually over time we reduced it to 1 break. We negotiated it and wrote it on the schedule.

I hope you find ideas. I know how challenging it is. (((HUGS)))
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#19 of 19 Old 04-20-2015, 06:30 PM
 
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Hi all, wow I feel so validated by you people! I am not a parent (I joined way back in 2012 and no-one said I couldn't so sorry if policies have changed) but an adult with autism. I recognize exactly what your children are going through. I want to let you all know how great you are for recognizing your children's behavior as in need of a remedy. My parents don't believe I'm autistic and I thought for a bit that rage/anger/low frustration tolerance was just normal. (I do carry a diagnosis of autism but it's been revisited so many times it's discouraging.)


I wanted to say that the explosive child book is great. For those a with teens (but also good for preteens) I also recommend Parenting a Teen or Young Adult with Asperger Syndrome (Autistic Spectrum Disorder) by Brenda Boyd. I have not read much of the book yet but it starts out by emphasizing that kids wiht HFA (like any child)need our unconditional love. Reading that was so liberating!


As for natural remedies for when the child is acting out, I heard (but have no personal experience) that DMG works quite well. It stands for dimethylglycine (there's also TMG which is trimethylglycine, both are used and I don't know which is better). This is a nutritional supplement. I for oen have unfortunately not foudn any medication that works for when I'm agitated and I don't see a naturopath and am too shy to ask about natural remedies to my regular doctor.
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