Child diagnosed with Asperger's today! Help!

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My five-year-old son was diagnosed today! Before this appt I thought I was a terrible parent and had a child who was just out of control. I know nothing. I am mad, scared, feeling guilty and need answers. Any advice would be great.

What are you mad about?
What are you "scared" about?
What do you feel guilty about?

There is likely one phrase which serves as the answer to all of these. "The unknown"

Because as you said, you know nothing...about AS I presume.

What you have there is a little boy who has the potential to become a world expert in whatever field of his interest. A little boy who perceives the world from a different vantage point, giving him the advantage of formulating ideas that most others are not capable of. A little boy who is probably very well intentioned, and likely very frequently misunderstood, and a little boy who is going to need you to outline for him in a very step by step, analytical way how to make friends.

Try get him into an environment where people are tolerant and accepting and where he can express himself without being punished. Feel proud of his uniqueness, it really is a gift that will astound you with it's power and beauty. Keep him away from conservative controlling bullying people as long as you can as much as possible. This will make soooo much of an impact on his socialisation I can't tell you how important this is.
And learn lots about Aspergers- read or watch Temple Grandin, she's ace. There are others but I don't really know who you'd like, try shopping around on the site.
I have Aspergers and the thing that helped me the most was having a sense of humour and just not taking it too seriously. I realise this seems flippant but being able to laugh at something whilst taking it seriously is a sign of intelligence
It'll tear you up inside if you take to heart every awful thing that is said about your boy- the sooner you learn to ignore the haters and say 'he's ok, I'm ok, they're f****d up' the more it won't matter so much and the happier and healthier you & he'll be in the long run.

You've been handed a set of keys. It will take a while to learn what to do with them, but believe me when I say that in the future you are going to find life with your child to be so much better all because of that set of keys.

And you are not a bad parent. You just weren't given the right set of keys before. It's like you've been trying to drive around Los Angeles using a map of New York. Even the best driver in the world would get lost.

Boy, have we all been there on the bad parenting thing; wondering why we could follow all we've told so exactly and still not be able to "mold" our child like that other mom down the street seems to be able to ... and then there are the comments from strangers, who all seem to know exactly what our unique child needs ...

Well, here is your first gift: you get to throw all that baggage down the garbage shoot. From now on the advice of strangers and pretty much everyone else living a "normal" life is useless, and you will take your best clues from your own instincts and your child himself. While there are some general guidelines that you'll discover on this forum, that will help you parent your child, you'll also discover that there is no single plan that applies to or works for all AS children. Your child is your guide. Enjoy your child, and get to know him and his world. It is, actually, really special.

your kid is the same as its always been. nothing has changed.

your not a bad parent at all, and it not your fault.

your kid is not misbehaving. he is trying his hardest to behave, all the time.


in the end, you will both be fine.

http://www.wrongplanet.net/postt137929.html I wrote this for just such an occasion!

It's okay. It's not bad. It's good that you know what's going on. A diagnosis at five is very good. Tell your son about it if you haven't already.

You don't need to be scared. First, because fear won't help. But second because there's nothing to be scared of. Things will be taking a different course from what you imagined, in ways you would never have thought things could ever be different. But in many ways, you'll find it's really not that alien.

He's still your son. Your biggest challenge is telling the difference between AS and bad behavior. That will get easier with time, probably, and with his ability to communicate. However, it will always be hard. Err on the side of assuming there's a reason. Why? Because chances are, he's doing his best. It's the more likely alternative; we don't tend to be mean without provocation.

And learn to tell when it's both at once.

Don't try to force him to make friends; don't try to keep him from stimming. He'll probably make friends eventually, if he hasn't already, but he doesn't need friendship as much as most kids his age. But if you try to force him to make friends, you'll undermine his trust in you and wreak havoc on his confidence. And stimming may sometimes be unsightly, but it's helping him function. It's the way he keeps himself on an even keel.

The best advice right now is what DW said - relax because you're better equipped just knowing that your kid isn't trying to "be out of control".. you can approach him from the right viewpoint now; that he's overwhelmed and most of his "acting up" is him trying to deal with that.

Unfortunately, as you've probably discovered, a simple "whats wrong?" often doesn't get useful feedback when "out of control" is happening... you're going to need to identify possible causes. This can be done by asking your son after the fact - after a cooling down period.. And you can use us. We might not always get the right answer, but you have a resource here in people who've either lived with AS & Autism or who deal with it in their children or families (or both) and though we sometimes might be a bit blunt (another typically AS trait) with some advice, and sometimes things might come off as know it all or commanding (I've been accused of both) you'll hopefully find in this place some profitable tips, and heartfelt wishes for the best outcome (and with knowledge, the outcome can be great).

Welcome Amber. Please stick around.

At least you found out what was wrong with your child. They did not know what was wrong with me they miss diagnosed me as having ADHD and put me in special education when I was not learning disabled. They essentially cheated me out of a proper education. You do not know how important a diagnoses is so your child will not be second guessing him/herself wether they are insane or not. Good luck.

Remember to let him tell you what he's capable of. If my Mother listened to the 'experts' I wouldn't have finished primary school let alone have gotten my Degree. My Mum looked at me and said to herself that I was well capable and so then I was. Children respond to how they are thought about sometimes.

There will be tough times love and respect can help a lot.

It may be that you may need to spend more time on homework with him, my Mum needed to with me. Patience helps a great deal and realising that an easy thing for you can be really difficult for him. Although, don't be supprised when he understands something you barely understand. It will be a learning thing for you and him.

Social things will need to be explained. Example: he does something bad, you'll need to ask why he did it, then explaining why it was bad, then explain consequences if it happens again. If he says, what did I do wrong, he'll probably be totally serious and be asking for an answer. Punishment without explaination doesn't work because he may have no idea why he was being punished.

The only thing I have to add to all the good advice already posted is: try to remember that behavior is communication. If your child is doing something that seems "out of control," there is a reason for it. Just because you don't know what the reason is, doesn't mean there isn't one, nor does it mean that he's being manipulative (he isn't) or that he "enjoys" upsetting you or others (he doesn't). Something is upsetting him - maybe it's the fluorescent lights, if he's in a room with such lighting; maybe it's the feel of the clothing he's wearing; maybe it's an odor that you can't smell (or can barely smell) that to him is overwhelming; maybe he's been asked to sit still too long, and he needs ( needs, not wants) to have some physical activity. If it's not a sensory issue, maybe something has happened that has upset his sense of order - did someone sit in the "wrong" seat? does someone play his favorite game using slightly different rules?

Many times, when one is the parent of a child on the spectrum, one of the items added to the job description is "detective." LOL! You will need to try to figure out what is the cause of your child's upsets, so that when possible, you can help smooth them out, and so that you can help your child learn to deal with them more effectively - learn to distance himself (when possible) from irritants, ask for help, and otherwise find ways of handling himself in the world when it can be, at times, quite difficult.

welcome to wrong planet, amber =) i am sure your mind is reeling right now. let yourself feel whatever it is you are going to feel, and then.... let it go. shock, denial, guilt, anger, despair.... its all normal to feel. then get yourself to a point where you can let go of those negative feelings, and start on this new journey.

like other posters said, your son is ok. YOU are ok. and this diagnosis doesnt change your son, but it WILL change your understanding of him and allow you to learn how to help him learn and grow. dont look at the diagnosis as a bad thing, all it does is put name to what was already there, and it shows you the direction to go. that can only be a good and positive thing for your family.

one of the most important things i could tell someone who just had a child diagnosed with autism is, learn to be flexible. this is especially true if you have other typical children. with an autistic child, sometimes the best thing to do is what all the parenting advice tells you NOT to. you will need to be a master of creativity. hence the whole bad parenting thing most of us go through; when what you are suppose to do as a parent doesnt work, you feel the problem must lie with you personally. let that go too =)

the internet is at your fingertips. there is sooo much info out there for you, start googling =) i found it valuable to get familiar with the diagnostic criteria and how it can manifest, so i could tell what behaviors were most likely autism related. unfortunately l, i dont have any links for you right now, but look through the suggested reading list, and start reading through some of the threads here. thats a good start =)

Welcome! For me it has been a really long journey and I totally "get" your post.

For me, the biggest help was to find out that my son didn't know what was bothering him, nor did he have the words or ability to communicate it. (even though at 10 his vocabulary is better than most of my sophomore son's friends). Because his vocabulary was so great and he is such a communicator, it NEVER occurred to me that he may be having sensory issues. It didn't occur to me that he has anxiety issues. It didn't occur to me that he has issues with change. He never said he was bothered by these things.

However, I started writing on a calendar what was happening everytime DS melted down and I figured it out. He is bugged by all of those things - but his is not change resistant rather change reactive. He reacts to all of those different things - but doesnt resist them. In fact he thinks he likes some of them. An example would be... He loves my cousin and was thrilled that he would come stay at the house. However we experienced daily meltdowns for the 1st two weeks. This is just one example. By calendaring every meltdown, we were able to figure it out and reduce meltdowns from 10 to 1. They still happen, but it is rare.

Something that I wish I had known in the begining - Speech and language assesment, specifically for pragmatics would have been great to do 1st rather than last. If we had this info prior to all of the other testing, all of the testing would have been more helpful.

A few things I forgot to say when I first posted, above:

First, welcome! We really hope you can find a home here. Things are quite a bit different on this forum than other places you've gone to, since this site isn't real big on social conventions, but everyone here really cares, and that does comes through, once you know how to hear it. Don't allow the abrupt style of many of our posters get to you; our AS members in particular say what they think, and that isn't always right - they can attach touchy issues from their own lives to strangers just as fast as anyone else. But if you can set aside those moments, you'll find that being able to hear from people who have walked in your child's shoes is an amazing thing.

Second, one of our AS members has written a book, free to download, that is incredible. He has long been a valuable resource to all our parents, and over the spring and summer he took that experience and compiled it into a book. He is currently busy working on his master's degree, but you will find the book here: http://www.ASDstuff.com

Um, I hope this is not inappropriate - I know how many people on this forum feel about Autism Speaks - and in general, I side with supporting neurodiversity, where they have been accused of not doing so (I don't know the history or specifics about this rift, I'm afraid - this is just what I have gathered here.)

However, in doing online searches for more appropriate treatment for my son, I found that they have two "first 100 days" kits: one for Asperger and one for Autism I looked over the Aspergers one and it seems to me that it's got a lot of good basic information about what to expect from the outside world that you're about to encounter: therapies, clinicians, vocabulary and a bit of history - even if I don't agree with some of what they've written, I think it would have helped me to have the background information when we got the initial diagnosis.

The linked e-book, above, is wonderful, as are several of the blogs various members have linked in their signatures. I've only been on WrongPlanet for a few months, but the insight I've gained here has made a HUGE difference to our family.

If Autism Speaks has a useful tool kit, it is appropriate to let parents new to all of this know about it. There is a bit of a culture war going on between parents on approach to the whole condition, and who has a right to speak for who, but a new parent may as well be aware of that going in, as they will have to choose what they want to believe for themselves. While many of our members here still harbor a lot of suspicion about Autism Speaks, the organization is also funding Alex's Autism Talk TV (Alex is the founder and owner of this site), so hopefully they are growing and evolving just as we are. At this point it is quite possible that people are mostly still looking at different parts of the elephant, so to speak, and that when the information gets combined and sorted through properly we will all have a better picture. I look forward to the day the bridges get crossed between all those with a vested interest in doing the best by kids with AS.

Oh, yeah, I completely forgot about the politics!

Autism Politics 101

You need to know about the Neurodiversity Movement. What they believe is basically that autism is within the normal spectrum of human variation, and is a valid way of being and not something that should be cured.

Almost no one likes Autism Speaks, mostly because we don't feel that they speak for us. Some of us also dislike the way they spend the money they're given. Most of us also feel that they're excessively pessimistic, and do not approve of the things they think of us.

There's a constant debate over whether autism should be cured, as well as over who has the right to weigh in. No, really. "High-functioning" autistics and those diagnosed with Asperger's always have to face arguments about whether we ought to be allowed to weigh in. On the one hand, we're talking about our own experiences and make up the vast majority of the spectrum. On the other hand, we're Not Like My Child (TM), which is to say that some parents of "low-functioning" autistics feel that those who are able to explain things coherently are probably too "high-functioning" to actually understand how desperate and terrible their (the parents') situation is. Oddly, being considered too high-functioning to opine seems to be correlated with disagreeing with the person evaluating our functioning level.

Of course, many of the kids in question are young and will mature to become more like the adults and older teens who are trying to explain things. And sometimes unwarranted assumptions are made, like "you can post online, therefore you can speak."

Functioning labels! High-functioning. Low-functioning. Parents love them. Autistics usually hate them or like to call themselves high-functioning. We've had countless debates about what they mean. We can't agree. When we come up with a sensible, consistent idea, we find that it doesn't get used, or no one else thinks it's sensible or consistent, or it requires way too many categories... I fit the stereotype of a high-functioning Aspie, in case you'd like to decide that that means I have no right to tell you anything. But that's only a stereotype.

Scandals happen from time to time. We're human, after all. You'll pick up the rest on the fly; it's not as hard as it seems!