mom looking for advice

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we have one of those beautiful amazing little boys as well =) ours is 4, dx with asperger's.

a diagnosis is not just a label. we pursued a medical diagnosis for the information it would provide to us. it gives us ideas on how to deal with various issues that come up, provides possible motivators for his behaviors. it explains things. it also gives us hints to what may come up in the future, so we can be better prepared. the diagnosis didnt change him or how much we love him, but it did give us a better understanding of him. and when hes older, it will give him a better understanding of himself, too. it will also let the school know that his behavior is not just a typical kid acting out, its the result of a brain that is wired differently.

his school is refusing to give him an academic diagnosis, and we are currently fighting for one. he currently has an iep for speech and that gets him the other services as well. once he is finished with speech however, that also means they can cut him off of all services. they say they can re-evaluate him later down the road if they need to, but i dont trust that will happen. or if it does, i have a fear that the gains he is making now will allow them later to say he doesnt show enough symptoms to get an autism spectrum disorder diagnosis, and thus he wouldnt get services. i just dont have the faith in the school system to do whats right because its right. i want to make sure they have no other option but to do whats right.

my SO was very much like our son when he was younger. we are currently trying to find a local specialist who can diagnosis adults as we are sure he has asperger's as well. this was a new realization for him, and i know that he wishes he had known growing up. he had a lot of social and sensory issues. for decades he believed he had some form of agoraphobia because of how he felt in crowds and confronting people. i think if he had gotten a diagnosis, his life would be a lot different than it is now, he would have learned to adapt to the world better rather than believing his thinking was typical and the rest of the world was crazy. i know it certainly would have made the last 11 years with him easier =)

this made me curious. does he interact with peers his own age in a typical manner? my son is mostly fine with adults, its only when hes with other kids that the social problems show themselves.

First of all, thank you all so much for taking the time to respond to my post! There were so many amazing insights in these replys that I can't even list them all individually. I can only thank you all.

Also, I am so sorry I spelled aspergers wrong, and embarrassed, since I usually pride myself in my spelling, but now I know!

This site, and especially these messages, have been incredibly eye-opening. I have to explain, to those who asked, that I am not afraid of the label, as we have known for a long time that these possibilities existed for my son, and that there was most likely "something" going on. I just think I am realizing now that I've been looking at my son's perspective from my perspective, if that makes any sense. I guess I believed that if it were me, I'd want people to not--I don't know--judge me based on the diagnosis without getting to know me first, so I thought that would be best for my son. But now that i am able to hear the word and views of people who may understand my son's perspective (and future perspective) more than me, it feels like a gift. I am starting to realize that he needs to understand himself, as much as we need others to understand him. He needs to know that he is not alone. So, I need to ask...is there a right time for this news for him? As someone pointed out, he is only 6. Young and innocent, although I realize the social pressures of school may be starting to add stress to his life. We already do explain to him gently but often that some things may be harder for him than others and that it's ok. We have conversations with him about his challenges and we try to explain to him not to worry too much about them, just do his best and that he is a great kid and he is talented in so many ways.

I am so glad to hear that my words helped you understand your parents in the same way yours have helped me understand my son--THANK YOU! The protectiveness from external judgement has kicked in as my biggest maternal instinct with my son, right or wrong, that is how I have felt. To be honest, without this site, I may have never changed my mind.

Ok, so now that leads to some other questions, if anyone is interested in sharing. (and please keep in mind that i absolutely realize that everyone is different, so everyone's experiences are different, and that some of the things suggested may not apply to my son, but I think these are questions worth asking, so I can see if I gain some insight that will help my son.

Is there anything you wish your parents did differently? What is your best advice for us as his parents? We want to understand my son and be the best support for him that we possibly can be! His grandparents also want to support him and are looking for advice. Also, do you have any recommendations for how we should handle behavior issues. (I realize there is a parent's forum on this site, but I am asking here because I think it actually may help for someone to think back and use hindsight to let me know what could have been handled differently, what would have been more effective for YOU, etc.) I mean, small behavior issues are not a big deal, we certainly pick our battles, and understand why he does some of the things he does, and that is ok. But, there are some things that just are not really acceptable, such as talking disrespectfully to adults or--much more importantly, because it involves the safety of others--throwing tantrums that lead him to hitting or kicking others. Those are things that I can't just completely "let go" but how could I handle them, or what advice could I give him? As I said, he knows what is expected in these situations, but he says he just can't remember to "make the right decisions." I want to understand what makes this hard for him and support him the best I can. And lastly, is there anything you would tell my son, any advice to give him at 6 years old, going into 1st grade. Basically, what would you have liked someone to say or do for you that may have made a positive difference?

I truly appreciate all your help! Thank you for trying to help me be a better mom.

Tantrums and blurting out inappropriate things are often the result of stress. You might be able to prevent them to some extent by making sure he is not being overwhelmed by his environment.

Many people with AS are sensitive to loud noises, bright lights, crowds, and any situation in which there is a lot of activity and a lot of different noises. Sometimes we just need peace and quiet in order to calm down. (For myself, meltdowns are brought on by people saying things I find outrageous and wrong, so it perhaps would help him to realize that other people will say bad things but it's okay not to respond to them. Though to be honest that's difficult for me to keep in mind even at 46!)

wow - great response.

what i wish my mother had done differently? scoured the earth looking for answers, especially when i was a nearly suicidal teenager, but this was around 1989-90, so the answer didn't exist then. and i realized in retrospect i had been unable to communicate anything close to what i was experiencing. i hadn't the language for it; i was far too confused about it myself.

but i think what would've made the biggest difference: confirmation that yes, i was dealing with something extraordinary - which was responsible in part for both my unique talents and my difficulties.

re his behavior, not sure, other than the idea that when he's overwhelmed he might just have an overdose of metaphorical beez buzzing round his head, and need to be relocated to a dark quiet place to recharge. think of his brain as a sparsely wired fuse box: too much coming in (either sensory or conversational) and fuses will start to blow. it may be more realistic to infuse his day with some down time / escape mechanisms than to request that he behave differently. or maybe someone else will have better advice about this.

when to disclose?
hm. i bet there is stuff written about this in the parents' forum, but if it were me, i would post a new topic in the general autism section asking for opinions, and hear from those diagnosed and informed at different ages what they think would've been best. i was telling people i was from another planet by the time i was 5 or 6, so i knew something was up.

it sounds like you have a fantastic attitude toward your son. i wish you the best.

Continue to love him and foster his sense of self-worth. (Sounds like you're doing a great job already!) Encourage him to play to his strengths, building confidence in himself and his abilities. These are the most important things you can do! It seems to me that people who have done well for themselves (anywhere but especially on WP) are those with enough self-confidence to enjoy, even relish, who they are. They are not afraid to share it with others.

Don't worry if he makes few to no friends his age as he grows up; he will in his own time and way.

Understanding his trigger points will help him find ways he can avoid being pushed past what he can handle.

If he develops a fear of something, a really detailed, logical explanation about it may reduce or even eliminate that fear. For example, I developed a fear of flushing the toilet after I accidentally overflowed the bowl once. I harbored this fear for a couple of years until finally someone explained to me that you can't overflow a bowl with just one flush. (Obvious, I know, but for some reason that didn't occur to me.) After I had a way to avoid that what I feared, the fear completely vanished.

I'm glad you've posted here. Welcome to WP!

bee33, katzefrau, and fiddlerpianist...Thank you so much for these thoughts and ideas. They are so helpful! I truly appreciate the thought you put into your answers!!

An underlying theme seems to be self-confidence. I will do my very best to help him be comfortable with who HE is as well as accepted and loved! And I also appreciate the thoughts on what may "set him off" and I will do my best to control or at least understand those situations.

Thank you--if you think of anything else, please add it anytime, every little bit is helping me!

I met a Mom at a party recently and through conversation we came to know that we both have sons with autism. I asked if her son had a diagnosis, and she said no, that she didn't want to label him. Then she said, "But he got labeled anyway." And that's the crux of it for me.

When someone is unique and responds differently than the others they do get labeled. We all get labeled don't we? I have red hair and fair skin, I got labeled for that. People judge, we can't protect our children from being judged by others. We can't even protect ourselves from being judged by others. What we can do is try everything in our power to protect our children's self-esteem, and to teach and model self awareness, so that they don't internalize the judgements. Like another parent said, a diagnosis is a tool, it's information that helps us, our child and the world understand a very significant aspect of who our children are.

Even though it's changing rapidly, the world still doesn't understand autism. By embracing autism, educating yourself about it, you will begin to normalize it. You'll be able to arm your child with information that he can use to understand himself. Eventually, he'll probably be in the position where he'll have to educate people (NT's) about autism if he's social, and that has the potential to be very empowering for him.

I know that it was very empowering for me, when I was going through the process of realizing what made my son so different and then, seeking and receiving a diagnosis.

I can "hear" the love oozing out of your post for your son, and the desire to protect him from the ignorance of the world. I have experienced that the best protection is found in knowledge. The earlier your kiddo accepts himself, the better. And that starts with you accepting him, all of who he is and not being afraid of them and their
inability to get past your son's differences.

i thought of something else that might be helpful, that i have only really figured out after years and years of being upset about my own behavior.

people with AS are mindblind (or as Tony Attwood says, "mind-myopic") or at least have theory of mind problems.

if something is upsetting me, i will innately think someone is responsible for it and knows it bothers me and must be doing it on purpose knowing it bothers me, and i'll become infuriated really quickly. example: someone was cleaning something in an enclosed room and the chemical smell of the cleaner made me feel like i couldn't breathe. i was very angry, but i managed to calm down and separate the "thing" (the smell of the cleaner, which was the real problem) from the person before saying anything. that's a massive workaround that takes a lot of thought, though, and a child probably couldn't manage it.

so you might want to talk about the idea of "other minds" with your son. tell him when someone else does something that bothers him, they don't know. maybe he won't act out so quickly, if he can try to remember this. even as an adult, this is very difficult for me.

In terms of talking disrespectfully to adults:

I would try hard to understand what he is actually trying to communicate, it may not be just be anger and frustration. Constantly trying to communicate and failing can breed allot of anger toward the other side of the conversation. Just saying this is wrong without explanation can equate to saying that communication is wrong, and that is not a good lesson.

Tantrums:

I don't know what this is like for others, but for me this really is a different state of mind. All rational thought is gone, so making the right decision is not really possible. Identifying when the this is starting to happen and avoiding the situation before you get to that state does start to work eventually. Part of the problem however, is that expressing an intermediate/normal level of anger is important to proper social functioning, I don't know how you get that or if it is even possible.



There are two thing I got when I was young that I think really helped me:

1) Taught emotions out of a set of psych children's books.

A shrink suggested with when I was 6-8, and it was really helpful. Beyond expressing emotion and recognising it in others, they have to be separated and understood within yourself. Without it being explained logically, I only had one emotion that was the combination of all normal emotions, and sometimes still have this problem. I cannot describe exactly what that is like, just to say they it quite painful and confusing. I think this is only a problem for smaller subset of people on the spectrum, but if looks like one, this may help.

2) Support of special interests

I would suggest that is is hard or impossible to truly guide what becomes a special interest, I don't even understand why my interests are bounded like they are. However being exposed to interesting things, being able to take (some) things apart to understand them and being able to design and build crazy things, is a happiness that is hard to express and gave me the career I have today.

When to disclose I think is a complicated issue, and I have run out of time, I will try back latter. I like katzefrau's idea of a poll and would be interested to see what the result is.

You should get him diagnosed as soon as possible. Also remember...it's autism, it's not the end of the world. Acceptance is the best cure. Kids should be kids, and the younger generation of our kind, should be accepted and free to have a childhood, so that everybody can live their lives in peace. Acceptance, not cures.

I think it may make sense to get him evaluated, and get an answer as to whether or not he is on the autism spectrum; but there is no reason why you need to disclose that diagnosis to his school. If you're worried that they'd stigmatize him for being autistic, then you're perfectly justified in not telling them, or not telling them until they know him as a person.

The reason I say that it's important to know is that he does have what you call the episodes where he gets out of control; and those are classic autistic-style meltdowns, which are what happens when your brain just plain gets overloaded. They need to be managed not by punishing them or trying to interrupt them in the middle, but by removing the stressors that create the overload in the first place. They can be a real problem for autistic people; and if your son has them, and he is autistic, then they need to be addressed as autistic meltdowns, not as simple "bad behavior" that is "wrong" and should be changed.