How did you react when you were told your kid had autism?

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When we were told our daughter had AS I was relieved. But you have to take into account that came after 3 years of trying to find out what was going on, and 4 different specialists. Knowing what she had meant we could do something about it. And that was about right. After 2 years of therapy our kid was able to attend a regular school, and she is doing great now. But I know parents who do not accept the dx. I think it has to do with the fact that they see their kid's "problem" reflects on them, like if there is "something wrong" with their kid that means there is "something wrong" with them, so they just try to ignore it. So sad. The fact that your mother thinks you have instead of AS only proves how little she knows about the subject. ODD is a diferential diagnosis for AS. Most people with AS show signs of ODD, ADHD, depression, anxiety, etc.

Yep, mine thrashes in the tub and bolts frequently. I deserve some sort of medal for managing to give him haircuts.

When it was first suggested and he was referred for assessment I was shocked because I hadn't suspected anything - he's an only child and my parents kept saying how like me as a child he was. He was also extremely verbal and very articulate and the only other autistic children and adults I'd met up to then were more profoundly autistic and pretty much non-verbal.

However, I took myself off to the uni library and as soon as I'd done a little reading I realised it was Asperger's. I can't say what my emotional response was to that, I don't know that I had one. It made logical sense to me, and it meant that I had a better understanding of him and I adapted my expectations of him in the light of my new knowledge. For example, his extremely picky eating stopped being such a source of stress for us, and I went by what he would eat rather than what he "should" eat.

By the time he was actually diagnosed it was a confirmation of what I already knew.

No, I would not prefer him to be ODD, but if he were then I would just have to deal with it.

I reacted badly. I could'n eat or sleep for a month. He was 3 yo and his autism was severe. He will be 5 in september and he became verbal between 4 and 5. I was happy but his neuropsichiatrist emphasized a week ago that I shouldn't be taht happy, he's 2 yeard behind his peers. I never tought about this and I'm in grief again. I know I should ignore her but I can't. I need time and I'll try to not give up.

((hugs)) My son is 3 and has communication delays. My son is at least a year delay. I have my bouts of feeling down and had to work from home for 2 months straight while I processed the information (I broke down in tears at work and my manager had to help me leave so no one would see me). I get down whenever I read some of the post on the General forum. I have to keep reminding myself that my son is an individual and can accomplish anything. We just have to work with him to be his absolute best.

Thank you. I'll try my best for him

When my first son was DX, I knew he had it and was searching for someone to tell me that what I thought was true. Everyone kept telling me he was fine and I knew he wasn't. I still vomited in the trash can when I heard hte words though. After his DX, Yale suggested that I bring his identical twin brother in to be evaluated too. I thought that he was fine. 1 hour into the eval they took me aside and said, "You know where this is going right?" That kind of clued me in. I was upset but not shocked. I learned that if 1 identical twin has autism there is a 70% the other will.

I went into the eval expecting an ADHD diagnosis. I had read about AS and seen the DSM-IV criteria for it, but didn't think my son fit the descriptions of restricted interests and repetitive behaviors. So I was shocked when the psychologist said he had AS and my first question was, "Are you sure? He doesn't have a special interest." The next day my husband and I took DS5 out to a toy store and said yes to a bunch of toys he asked for.

For about the first six weeks, I woke up in the middle of the night every night and worried about what to do next. It didn't help that the advice from the psychologist was basically, "Go ask the school for an IEP." The group just did diagnosis, and handed out a booklet with the names of about 200 service providers in the area (in alphabetical order), no real advice or followup.

So I'd say my initial reaction was basically grief and confusion. Grief that my son was projected to have such a difficult time socially and employment-wise. Confusion on what to do to help him.

I think the age of the child at diagnosis makes a difference. A 2-5 year old is changing rapidly and your vision of who they are as a person is not really formed yet. I'd imagine that having your child diagnosed in middle or high school would be harder to reconcile with your understanding of who they are.

It sounds like the OP's mother is in denial that there is something neurologically different about her child. ODD seems like a label given to "bad kids" who defy their parents and get in trouble at school. Her saying you have ODD instead of AS may mean she thinks you *choose* to behave oddly/badly rather than understanding that you often don't understand or can't quickly figure out what the expected behavior in a given situation is.

I was very angry at my son's preschool teacher when she suggested to me that he be evaluated for AS. I had NEVER even thought he might be on the spectrum because he didn't have any of the red flags they tell you to bring up at the Doctor's office. He didn't regress and all of his milestones had been right on time!!

I did know something was up, though. I had been talking to the doctor about the fact that he hated crowds and wouldn't stop hitting. Once we realized a lot of the stuff was related to sensory issues, things got a lot easier for us. Also, he never did imaginative play, which set him apart from his peers.

Once we got the school diagnosis, I was already on board with it. I had spent a lot of time researching and would have been surprised to hear anything otherwise. That being said, he scored RIGHT on the cusp. He could have easily not been on the spectrum for the school evaluation... but I'm so happy he scored on the spectrum side because he has enough traits that we've needed the interventions at school.

Would I rather he have ODD? No thanks!! He's very rule oriented, which makes our lives easier a lot of the time!! !

What an insensitive JERK! Seriously, I would consider losing him/her as part of your son's team. He/she clearly has no respect for the hard work your son is doing. I would be so livid if someone said that to me.

Our kids don't develop like NT kids. To use an NT measuring stick to measure them against is blatantly inappropriate and--to be honest--cruel. Your son should be measured against himself. Not against kids who are not like him. I think one of the joys of being a parent of kids on the spectrum is that we get to revel in the amazement of development that I think NT parents never really see. We take no developmental step--no matter how small--for granted. We experience joy in the tiniest of things. I think that is beautiful. The fact that your neuropsychiatrist stole that joy from you is deplorable.

Think of it this way. Most kids go from "non-verbal" to "verbal" in 2-3 years. Your son went from nonverbal to verbal in 1 year. I find that impressive.

OP: My original reaction was also one of disbelief, not because I was unwilling to accept Asperger's, but because everything I read about it pointed me to a very stereotypical version of it, and the assessment the school did offered no insight into how to help my son. Because he had a very specific rhythm to his moods (which were indecipherable to us) and because I, myself, have a tendency to hypomanic/depressive moods, I thought he was bipolar.

Later, when we got an assessment from people who knew how to explain it to us and to point us towards the right interventions that finally helped, I saw that my son does indeed have AS - and I probably have it, too.

Maybe your mother could benefit from some family counseling with someone who specializes in AS, so they could explain how the ways in which you seem defiant are in fact part of the social communication/rigid behaviors of AS. I think many parents struggle with this: it's hard to reconcile having a smart kid who just can't or won't do things like other smart kids.

Relief. I actually thought, "So, maybe I'm not crazy after all." We'd been struggling his entire 4 1/2 years and had just thought parenting was super hard (it is, but you know what I mean.) By the time I had researched all of the behaviors we were starting to get more concerned about, Aspergers and Sensory Processing Disorder had popped up multiple times and my gut knew that he was a pretty good match. But I still doubted whether or not a professional would qualify him as 'serious' enough of a 'case' to be ASD. He doesn't stand out as a quirky kid . . . most of the time. Well, just a little quirky, but most people at a glance would just think he's any other kid. So, I just wasn't sure if I was over-evaluating and reacting to the issues we were having.
Now, I think--after talking to so many ASD parents and reading so much, I believe I seriously under-reacted. I should have taken him in sooner.
So, I was still a little surprised ...but mostly relieved that I hadn't been going crazy to seek an evaluation. My husband was initially not so sure about admitting our son was anywhere near the spectrum. But the more I gave him to read, the more he also felt relieved that our little world of craziness had an explanation and, most importantly, a positive place to start from, so we could know how best to help our son. Give him the tools he needs.
I am guessing your mom fears the ASD diagnosis reflects more on her for some reason-- a mistake she made, not being 'mom' enough, whatever. And the ODD she maybe feels reflects more on you? You're just choosing to be that way? Which is sad . . . and yet good you can see it, just step back, and let her fight the mental struggle. Hopefully, she'll come around if she reads up more. It is quite typical for family to 'reject' a diagnosis.
ODD? No way, no way. I think we have a little taste of it--and it would be very easy to say that is what he has, because he defies A LOT. But I believe his defiance is tied to his sensitivities, his perseverative behavior, his fears, his OCD. And so when we tackle the defiance by figuring out why it's a whole lot better for us all.

Maybe what the neuro-psychiatrist is trying to do is trying to keep you real about the situation. Probably she does not want that you start creating in your head a lot of false expectations. That happens. But I do not think she handled the situation the best way possible. My daughter's AS is very mild, and she was never that behind, and even though she is about 2 years behind in writing, in reading comprehension (it is very hard for her to get social situations in stories) and she is socially way behind her peers. Actually she plays better with kids younger than her. But that is no reason to be sad. We have to accept our kids the way they are. Because for every step back there are a lot of steps forward. There are a lot of things they are better than the others. My daughter has a better heart than any kid I know. That makes me happy.

My mom said she was relieved when I was diagnosed because she knew something was wrong with me since I was a very little girl but the Asperger's diagnosis didn't exist then so one had to have delayed speech in order to get an Autism diagnosis, and my speech was precocious. I was sent to many professionals who sspecialized in learning disabilities, anxiety disorders, ADHD, sensory/motor problems etc. When I was 13 (and the AS diagnosis had been in existence for 3 years)a specialist in anxiety disorders who my mom had been referred to through my school referred her for the AS diagnosis and she thought at that point that "something finally fit" and was glad to get it. My dad denies that there is anything wrong with me. He thinks my unusual behaviors were due to my being a "genius "and being bored (which I'm not....my IQ is just above average but not near genius) because I could recite prime numbers and count by different numbers as a very small child (at 3 years old). I also have a learning disability NVLD and I have trouble with spatial relations, so I had a lot of trouble learning to read at first (once I learned I was a good reader btw)because I would try to read upside-down , backwards, etc., My dad said I didn't have a LD but I was just a Hebrew baby - we're Jewish and in Hebrew you read right to left. My mom says he denies it because he can't see a lot of my symptoms since he is a little but autistic himself and would be too self absorbed and unaware of social cues to notice them. My dad does not prefer another label like ODD,he just maintains that I'm fine and North American society likes to label people too much . I had many debates with him about this at one point but I just don't discuss it with him now.

I find it helpful to think of perspective.

2 years seems such a big deal.. 2 year olds are very different from 4 year olds who are very different from 6 year olds.

Even 12 year olds are different enough from 14 year olds to cause problems and stand out.

But what about 19 and 21... hmmm a little different, but not so much.

Or how about 28 and 30. I don't really see much difference there.

I can give my child an extra two or even more years to allow them to "catch up" to the rest of their peers by adulthood, and in the big scheme of a lifetime, what is two years really?

She thinks that his delay will increase because he was really behind when he was 3... he was no capable of some 1 year skills. I didn't read that evaluation because I knew I would give up. I kept working hard without thinking, that's all. Whe he was 4 he was like a 2 years old, but still no language, so I think test were influenced by this. Now he's going to turn five and he has some language.