Some advice please....

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I am new here and have not had my son diagnosed w/ AS yet but have some questions. My husband and I have 2 children. Our oldest son, he's 10, has had some emotional issues that we noticed around 4 yrs old. The more we read about AS and the more 'rate scales' and questionaires we do the more it sounds just like our 10 yr old. At about 5 yrs. old we had him talk to a child couselor, however the diagnosis he was leaning to was more ADHD or Bipolar disorder. We were not happy with the sessions or the Dr. and they were not helping....so we pulled him out before any official diagnosis or tests were run. We've been trying to just deal w/ his 'break down's for years now....hoping he'd outgrow this 'phase'. We are now finally seeing that there really may be somthing wrong and are starting the process to take him to a child psychologist, waiting for insurance red tape, so we did some research on our own first. He over reacts to everything and takes everything way to seriously. Also, if he has a rough morning it will follow him throughout the day and he will have a very short fuse. He tends to say things w/out thinking of the consiquences, sometimes the worse thing he can think of to hurt someone, he's a prime target for bullies and gets teased all the time (we switched schools last yr due to this), likes to be alone and pretty much has 'the worst day of his life' at least 4 days a week. However, he's very intelligent and literal. He tested into a very good, difficult, school for 5th grade, loves science, non-fiction books and learning about new and odd things. He is very hard on himself...almost like a control issue. If something does not go exactly as he thinks it should or thought it would. . .he's done. . .and no way to snap him out of it or talk him down. He's been in fetal position under a table at school crying over someone looking at him wrong or the teacher raising his voice. . .everything is on purpose and there are no accidents (unless he's the cause). I could go on and on. . .but I want to ensure I say that he can also be the most sweet, loving and honest person I know. We love him dearly, and on good days, he's one of my favorite people to be around. The problem is...we never know when this will change or what will trigger it. We love him, therefore need to get him some help. We want him to enjoy his childhood.
**Any information, advice, etc. . ..is greatly appreciated.** Is there somthing we can do/try without medication? Are we starting this process w/ the correct type of Dr? Any tips on how to handle him when he's having a break down? (so far, in 6 yrs, we've found sending him up in his room to be alone is the best way...he snaps himself out and comes down a completly different person...talking only makes it worse)

One of the first things we did, which was a huge help, and even before we knew my son was AS, was to look for sensory triggers. Most AS have sensory sensitivities, and these stress them and make it more difficult to handle the other challenges of life. Find out what has been happening in the build up to a break down. Lighting, noise, people, etc. And remember that he could be reacting negatively to things he actually likes. Observe, watch, associate. Then work with your son to mitigate exposure to negative sensory stimuli. Most AS have sensory integration issues, and it is also possible that your son is not AS but with sensory integration issues. Either way, this is something you can work on without a diagnosis, and with a lot of benefit for your family.

As for where to start with diagnosis, that can vary by location. We were able to get all we needed through the school, but that seems to be rare. A diagnosis is only as good as what it can get you, and most of the benefits an AS child needs are at school. Sensory accomodations, de-stress opportunities, social skills training, pragmatic speech issues, etc are common items addressed in IEP's (Individualized Education Plans).

As for learning about AS, forums like this are wonderful. AS children are like all children in that each child has his own individual personality, weaknesses, strengths, and needs. But with a wide audience, you can usually find someone with the same quirk who knows a way to address it.

As for medication, my son does not take any, and probably never will. Any attention issues he has are due to sensory problems, and the better solution is to work on the environment. He does not suffer from chemical depression or any other conditions that cry out for chemical intervention. He is simply wired differently. As long as that is respected, he thrives.

Welcome to WP! I would say:

1. First, get him a diagnosis. Your description sounds alot like AS. I would also recommend getting the person you see about the diagnosis to come and observe him in the school environment and talk to his teacher as part of the process, as this is often where the main issues show themselves (they can look "perfect" in a hospital interview).

2. Get a good book of AS to familiarise yourself. Eg. Tony Atwood's, "Aspergers Syndrome: A Guide for Parents and Professionals". It will help you to "diagnose" him yourself and alert you to other AS traits he has that you may not have thought we AS, and will also help you to start developing strategies to help.

3. When/if you get a diagnosis, then go to the school and get an IEP (Individual Education Plan) - where they sit down and set some priorities for your child. Make sure they are pitching his academic level correctly (even if he needs to go to another class for subjects like maths), as well as prioritising social issues. Make sure they understand the main issues for your son, especially that what would usually be seen as bad behaviour is very often autistic behaviour.

4. Let him be who he is. Initially I had the wrong mentality with my son - thought I should try and help make him as NT a possible, but I have since changed to just letting him be who he is and more along the lines of equipping him with strategies to cope with the NT world.

5. Re alternatives to medication . . . have a look into Phosphatydil Serine, a natural supplement that is getting good press in the AS and ADHD world. You can surf the internet and read up on it, or PM me for more info.

All the best.

welcome to WP!

it's definitely a difficult road to travel, parenting an AS kid......sounds like you're on the right track. keep after the insurance company re: getting son evaluated. our insurance did not pay for son's eval....took it off our taxes, though....

i'd get books to read. try Ross Green's " The Explosive Child". It has lots of info about how to help your son. there's practical information in it which should help you not only figure out what sets your son off, but also what to do when a meltdown happens.

hang in there. so many of us have been where you are now. it does get better.

I greatly appreciate all of the information and support! Thank you.

Does anyone have any advice on how to talk to him about what is happening? I mean in the respect of Dr. visits and such. I know my son very well, but I want to ensure we go about this the right way the first time.....I want to ensure he doesn't feel different or like something is wrong with him. He's a very smart kid and 10 1/2 years old....5th grade and all (wow I feel old)....this needs to happen but I know he'll want to know and am just worried. It may just be the mom in me and my protective side, but I definately don't want him thinking he's sick or different....if that's possible. He obviously knows he has break downs and we've been working with him and his emotions for years, so he has a clue. But Dr. visits and such, that's all going to be new.

Thanks again!

When my son went into testing, I approached it from the standpoint of things that I knew were bothering him. He was getting frustrated at school, for example, because he was having trouble learning to write, despite being clearly bright. And he saw himself as "different." So, I told him that we were going to find out if there was a reason he was having trouble with certain things, because knowing the reason would help us know how to help him. He wanted those things solved just as much (if not more) than we did, so he was totally on board.

try to focus on the positive. if he's aware that he's having issues , then you can probably say to him that the doc is going to help you figure out how you can help him with his problems......if he has no awareness of having any issues, however, i'd just try to focus on telling him that the doc is testing him to see how smart he is ( most evals have an iq portion to them, so it's not like you're lying)

At the risk of offense... he is different. We all are, but those on the spectrum are different in an intrinsic fashion. To me, trying to gloss over that will only cause the realization to come later in life; at the least, it was my experience. Nothing is wrong with him, and to my way of thinking he isn't sick - but there are differences in how one functions and processes that means operating out of sync with others. Make the difference a positive he can use to his advantage - there is no substitute for confidence... and it means a lot more when it is genuine and innate. This applies even if he doesn't test on the spectrum; as a teacher, seeing students who are not aware of their difficulties is troubling to watch, because it means they don't have the tools to learn how to overcome it. In what you related, I can find a lot that echoes with me, although at that age I shut down instead of melting down. The sense of purpose can be difficult, and it is something I still struggle with... it is hard to accept accidents even in adulthood; it is a conscious effort to remind myself of that fact. Games of chance, dice, odds... these might be helpful, measurable ways to help him learn about things being predictably unpredictable. As for being able to guide or influence his reactions, I would guess that will be a learning process. It may be to both yours and his benefit to write down a list of what your expectations are for his development then discuss it with a teacher or doctor knowledgeable in ASDs to help understand what is reasonable and what may be more likely. Some things were easy, others took years. Is he verbal in his needs/wants? Can he describe what makes him happy? It is hard to know with whether there is a coinciding developmental delay in that area, or... Nothing herein was intended as hostile or mean; you're doing a lot just looking out for him and being concerned for his wellbeing and future (sadly, I've seen a lot of students whose parents did not have that same care)... just be aware that your own expectations have to be flexible and adaptable as well. Didn't mean to talk about self so much, but sometimes that is all I can relate things to. Best wishes, and look forward to your response on the matter.


M.

I agree completely. No offense taken, he is different...and yes, I think he understands this too. He has no verbal delays at all, he can tell us his needs/wants. However, there are times he wants us to be mind readers or he hints instead of just asking for something. And yes, there are the times he just shuts down, but this happens when he's about to have a break down. If you ask him a question in the middle of one he just looks at you as he's clenching his fists, arching back or head in couch. After he's calmed himself, we've learned thru the years if we try to talk him down or thru it it gets much worse, then he's himself again. He even understands his wrong or the situation after he's calmed down....at least he says he does. And yes, there are no accidents in his book. If it hurt, then it was on purpose and he hates that person. etc. . . .

I do appreciate the feedback. The more I read the more I realize he is aware and will be just fine. He's made promises to work on his emotions.....we help him (when he's calm and focused) with ways to help.....but he also realizes when he starts to feak out he doesn't think straight. So yes, I believe he knows he's different in some way. Maybe this will help him. He's a very smart, intellectual and creative. I feel much better now and can even picture the conversation in my head...I thank you!

Am thankful that there was no offense... goodness, the frustration there is certainly familiar - being able to speak, but unable to articulate what is going on. When mid-implosion, additional input can be overwhelming... although I can remember laughing my way out of some when caught completely off-guard. Not sure that is of any use, but it did sometimes help to untrack the train wreck. Mind reader... *shakes head* One of those 'if I had a nickel' phrases; my students often were proud after a couple years that they did become mind readers... *laugh* "I have no idea what he just said, but I think he meant this." Good kids. Do shutdowns automatically lead to meltdowns, or if let alone will he reset from the shutdown period alone? If it is allowing him to break away and preserve peace and sanity, it may be a perfect innate tool. In time, learning how to deal with the feelings can take place... for myself, I had to become familiar with what was pushing me there before I could start to redirect it. And to be honest, it still ends up channeled into anger and frustration much more than I would like. But at least I know it now, and I can try to divert my situation to avoid the situations to begin with. And I would wager he does understand to an extent afterwards; it is how he got there that is confusing. It is a guilty sensation, being aware yet unable to control, knowing in the aftermath that you have somehow distorted or upset others. The concept of self-knowledge can be scary, not only for you but for him... but given that often those on the spectrum rely on analytical processes instead of instinctual reactions, working with incomplete or faulty data can cause the repetition and inability to understand failures to adapt. Emphasize that everyone is different; his just stretch a little further than others. Experience replaces instinct, so be patient and discuss situations... while innate empathy may not be evident or easy, there are forms of analytic empathy that may help him relate, from experiencing a single situation from many points of view, asking the same questions different ways to probe out details. As I mentioned, find things that create innate confidence - while it doesn't solve everything, it provides a starting point for self-identity as well as helps define himself to others so that they might better react to him. He sounds like a great kid, and I really appreciate you taking the time to listen and respond... again, it isn't that I wish to refer to myself as it is that I lack other comparisons - what you describe is at time reading a page from a journal. I babble - hope all goes well, and look forward to hearing back.


M.

Being left alone, if home we usually send him up to his room to chill out, he can bring himself down. We have a very small house, and w/ a little brother and 4 of us in the house...his room is the best place. If we see the signs of a beginning melt down and we leave him be or send him to be alone he can also usually stop himself before getting to 'full break down mode'. Again, we're not sure yet if he even has AS, but from everything we've read...and the rate scale questions we've answered....he fits it to a tee. His 1st Dr. apt. w/ a specialist is on 8/7. I'm anxious as well as a bit nervous. I'm not hoping he has it or hoping he has something....but part of me thinks it will be an answer as to the 'why' we've asked ourselves for years....and the beginning to the rest of his life and ours. If we know, then we can help. The not knowing and guessing is the hardest. I feel a little guilty that we've let him go this long, he's 10 1/2, but everytime my husband and I would get to a breaking point of disucssing help, he'd go days without any problems. Plus, I don't know, I guess we were in a bit of denial. We didn't want to think anything was really wrong, just an emotional child, etc. . . .working full time and being so busy were excuses. I now wish we would have come to this decission earlier. Can't change the past, and he knows we love him and do what we can to help....that counts for something. This is my mom guilt talking again. LOL

Again, I thank you for your information, empathy and guidance!

Dump the mom quilt! I think 9/10ths of parenting an Aspie child is taking the time to understand YOUR child, and not just listen to what everyone else says "should" work, and it sounds to me like you have done that. If you are lucky to have been in a school environment that also lets each individual child be who they are, AS doesn't have to be an issue. It's only when the world around your child no longer has time or the desire to value uniqueness that it becomes important to have papers in hand to force them to.

Since middle school can be more problematic for AS kids, and puberty can be more difficult overall when AS is a factor, it will be good to have the answers in hand. I think your timing will end up working out just fine; you are likely to have the information when your child is most likely to need it.

It's really been a gift to parent an AS child. He is so amazing. His mind is so creative and completely out of the box. My son wants to be an inventor, and I think he can achieve that. He also taught me, as a parent, really quickly to throw out the rule and advice books, and just listen to HIM. That is a good thing, isn't it? It may be more difficult, but isn't that what every parent really SHOULD do?

Anyway, good luck with the process, and I look forward to seeing more of you here.

Most important: 3 encouragements for every critique given to him. You are most likely doing this for the critiques you give him, but try also for the ones he receives at school. I my experience teachers will be more critical of a child on the spectrum than they realize. My wife uses this techniques to help NT and children on the spectrum in her classroom, and in new ones. She can generate positive results in a week with only a few hours of interaction a day.

Next: Give the child choices. At least when I was a child I though my parents were idiots since I was 5 or younger. The reason is that they did not present obvious alternatives and gave the lame excuse of "because I said so." Giving the child a choice shows the child that their words and actions have consequences. When applied to social situations it can actually yield amazing results. The difficult part is getting his teachers on board.

Only use "don't" when absolutely necessary: Children are exploring their world to determine what will happen. Encouraging them to think their actions through and telling them the consequence help young minds develop. "Don't do that, its wrong" tells them nothing, "That is not safe and can hurt someone, even you" is a much better option as the child also hears "I like you and don't want you to get hurt." Just be sure to remember the top rule. Make up complements if you need to. He will let you know if they are too lame. If he asks why you are complementing him so much, on such trivial stuff, tell him the truth, you love him and want him to know that what he does is good, he is good, and the little things that he does are important to those around him.

There is a lot of information about common deficiencies and issues in those like your son and me with AS symptoms on the Defeat Autism Now, websight (DAN). Some of it is sulpher and magnesium, and zinc. They give more elaborate explainations about what they do. I would also really start with looking at things like food allergies, digestive issues, such as malabsorption, leaky gut syndrome, and inflammation of the lining. You will also want to look into possible metal toxicity. These things can cause a lot of trouble with sensory issues, moods, mental fogginess, and oxytocin depletion. Oxytocin is a chemical that is commonly deficient in those on the Autism Spectrum and is involved in reading facial expressions, disire for bonding, and relieves stress. A doctor can test for food intolerences and metal levels. There is also plenty of information on the internet about how to safely and natually detoxify your son from heavy metals if it turns out it is a problem. You will want to check out words like glutamine, and selenium, as well as MSM. There is so much you can do for your son naturally, and a lot of symptoms and problems can be caused by a lack of a nutrient, for example, lack of magnisum can cause sensitivity to light and sound, migraine headaches, heart trouble, cramps, and increased anxiety. Lack of sulpher can cause problems with the oxytocin levels, lack of digestive enzymes which can lead to allergic responses to food that has not been broken down, and lack of lining on the digestive tract. Sulpher is found in MSM, garlic, eggs, and epsom salts, which can be put in the bathtub. Anyway, Everything is linked and I hope I was able to give you some directions for where to start.

Here we go again with the heavy metal BS.

@OP: It's possible that balancing out your sons diet as stated above might help alleviate some issues, but don't expect it to be a cure-all. Things like what DW_a_mom and traveller011212 were suggesting will help much more. Those fancy detox diets never worked for me when I was a kid, but social skills therapy and other psychological supports did.

@Cher10: Firstly, if you're going to actually want to help people, then don't copypasta from Jenny McCarthy, because a) she's not exactly a professional when it comes to autism, and b) she's not well liked here and you're risking getting on the bad side of a lot of people.

Secondly, did I hear that right? Defeat Autism Now? If you're ever going to want to be a help to autistic children, then that's the LAST place you'll want to be pulling information. Autism is NOT a death sentence, and seeing as many people with autism are still able to lead decent lives, I don't see how any organization with that name is going to be of any assistance at all. If anything, they are worse than Autism Speaks, and I would not take anything they say seriously.

Take my advice: your kid has autism, and that's not going to change anytime soon, so instead of chasing after half-brained cures by inept non-professional quacks, sit down, do some research from RELIABLE SOURCES, and figure out how best to help your kid cope with autism.
The possibility of an autistic child with the right help growing up to lead a decent life is much greater than the possibility of a cure at the current day.

I am sorry the name of the organization I recommended is not great, but it does list some common deficiencies and factors that effect those on the autistic spectrum and can be an indicator of what to do to treat conditions that can make things difficult. I have struggled with every aspect of life having aspergers syndrome and I just want to help others to have it easier than I have. I am not trying to make having autism a death sentaince. I am not trying to quote Jenny MCCarthy. I do read what doctors write about the conditions that can accompany autism and not just the DAN Material, the information matched. Also, I have read about parents whose kids had autism symptoms and were checked for metal levels and they were excessively high. It couldn't hurt to get tested by a doctor.