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

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I am trying to better understand how my parents felt when I was diagnosed with Asperger's Syndrome. My dad was really understanding about it, but my mom dismissed the diagnosis. On numerous occasions, she has told me that I have AS as much as my brother does (he most definitely does not have any form of autism). A couple different times she has told me that she thinks I have Oppositional Defiant Disorder instead of AS. Is this normal behavior when your kid is diagnosed with autism? Would you rather believe that your kid has ODD instead of AS/ASD?

Our daughter is having a (first) evaluation tomorrow. Of the options (which are ADHD, AS(HFA), or ODD) I'm crossing my fingers for AS. ODD is the last thing, that's really hard to deal with period. Hard to treat because the kids just don't care or won't cooperate period (that's the whole thing, right?).

I know I'll accept and deal with whatever dx is given. My husband will have a much harder time.

A lot of parents go through grief when their child is diagnosed.
Shock, Anger, Denial, Acceptance, and Bargaining.

She may be in denial about it. Also if she is in any way similar to you she may be trying to hide her own symptoms. When my son was diagnosed I was in denial for about 4 months and very very angry. My son and I are VERY similar and thus it was a terrible slap in the face. My instinct was to do everything to convince the psychologist my son was fine and that if there was a problem it was me, their father, whatever just to protect my son.

In the end we were both diagnosed and that was that.

I had already pretty much figured out what was going on by the time I got the diagnosis for my son, so nothing really changed for me. I did feel a bit depressed for a while when I first figured it out, though - mainly after reading a ton of horror stories online.

My daughter (younger) was diagnosed first. The first time her doctor uttered the word to me (to tell me to go get her evaluated) I think I mostly felt...relieved. I think I knew on some level for some time, but I never said it out loud or even consciously thought it. Having someone else say it gave me permission to see it.

As the reality sunk in, I felt very sad. I had this misconception that autistics could not feel happiness and I felt very sad for her. She wasn't verbal yet and I had this imagine in my head of my beautiful little girl, trapped somewhere feeling all alone with no one to understand her. I was very afraid I would never be able to understand her or connect with her. I was consumed by this fear. The thought of her being alone was so unbearable to me that it made my heart feel like it would bust into a million pieces.

That was when a woman I knew online lead me to a group of adult auties and aspies. Over the next few weeks I was amazed to find out that she was not as much of an enigma as I thought she'd be (or at least autism wasn't as foreign to me as I thought). I actually understood a lot of what the people were telling me. I totally got stimming. I understood why she banged her head. The eye contact thing made sense to me. I realized all was not lost. I could have a relationship with my daughter. She could be happy.

My son (older) was diagnosed second. I knew from a young age that he had serious sensory issues. In kindergarten I took him for an evaluation (at his teacher's request, he was quite a handful) and they never mentioned anything to me about any diagnosis really. They just told me he was bright. Not helpful. So I was stuck with understanding that he had sensory issues.

In second grade things got a lot worse for him. He was really struggling at school and socially. It was awful. I was part on an online parent's group at that time (because of my daughter's diagnosis). People started telling me that he sounded an awful lot like their Aspie children. When I finally took him in to get him evaluated by a neurologist instead of the school district, he received a diagnosis of ADHD and NVLD. His neuro believes NVLD is part of the spectrum, btw.

With my son's diagnosis I felt guilty. I felt guilty because so much of my time and attention was directed at my daughter that he basically had to crash before I realized he really needed help. And after the piles of books and papers I had read about autism, how did it happen that he was living with it, right under my nose, and I had done nothing to help him. I felt like he lost a year of his life and a year of his own well-being and happiness because of my inaction.

One thing you must understand, though, is that my reaction is fairly atypical for parents. I never questioned their diagnoses, nor wished that they were NT. I never felt like they were "stolen" from me or that I had to become a "Warrior Mother" and rescue them from their autism. I have never seen them as suffering from a disease. Some may scoff at this, but I believe they are the way God intended them to be and I believe God gave them to me for a purpose. I feel honored to be entrusted with these beautiful kids. I come from a quirky family (BAP all over the place) and I don't know why the scales tipped further for my kids, but along with their challenges have come some awesome gifts. I've always tried to keep that in view.

This isn't to say that there haven't been challenges. But for me, the vast majority of the challenges are attributable to other people's ignorance, not my kids' wiring. So most of my anger has been toward others, not toward their autism. I do believe that if they were affected in a different way or in a more severe manner, it is possible I would see all of this differently.

To answer your last question: No, I did not wish my kid had ODD. In fact, that was one of the differentials I brought to his neuro. And I was quite relieved when he told me he most definitely did not have ODD. I do not know why your mom would say this, but I do think that some see ASD as the new ADHD. A diagnosis that is used to excuse away every sort of behavior. So I think some people maybe just think too many people are "jumping on the bandwagon."

Do you think it is possible that your mom is on the spectrum? I ask because for some people, I think their kid's diagnosis is tough because all they can think is "well, I did that when I was a kid" and the next logical thought is that perhaps you, too, are on the spectrum. I think that may be a bit much for some people to swallow at first.

My mom doesn't have AS/ASD. She is outgoing, social, and has lots of friends. She was even voted prom queen in high school. In her own words, she has "AS as much as my brother does".

How did I react? I didn't accept it at first b/c it was hard for me to believe my son's set of symptoms were an actual dx. His symptoms were so situational. After I learned about Asperger's, it all made sense. I actually much prefer him having a label than not. I mean, some of my friends have not had their children evaluated, so they really don't know what they are dealing with. I like knowing what I'm dealing with.

Would I prefer ODD? I would prefer the truth.

My son 3 1/2 yo son was evaluated by the school a few months ago in March and was found to be on the autism spectrum (they don't diagnose). They also commented that he had several mild developmental delays and mental delay. We took this news very hard. So hard that we contacted a neurologist a Columbia Med Hospital for a formal diagnosis. The neurologist says he did not have enough traits for diagnosis but he did have autism traits. He felt it would be better to wait a few years and have him re-evaluated. Then, the teacher who teaches my son 2 hours a day 5 days a week says my son is actually very bright and academically advanced. She thinks he scored so low on the school exam because of his delays in communication.

We are happy that the school was off, especially about the mental delay, however, it has still been hard. We have grieved over the difficulties we feel our son will have in life. For a while, I was terrified our son would regressed since DH has 2 LFA cousins in thier 40s. I still fluctuate between feeling depressed (why my baby) and feeling angry (wanting to take on anyone I think may have offened him). I feel like I am developing a serious case of helicopter mom syndrome. Hopefully when he starts pre-school and shows me what he can do, I will back off.

So basically, my feelings are still fluctuating. Hopefully I will come to terms with everything sooner than later.

I didn't notice your second question, sorry. I do not wish my kid had ODD. No way. I would not wish that on any parent - maybe your mom is just saying this because sometimes you defy her?

The helicopter mom thing is really hard to get rid of. I don't want to sound pessimistic, but pre-school heightened my helicopter-mom-ness. It started easing up the summer after kindergarten, but only with very serious effort on my part. I found I had to do 2 things: 1) stop working so hard to prevent every possible meltdown and 2) stop working so hard to prevent every possible failure or mistake.

Really, I don't know if it is related to the kid's age, or just a gradual relaxing as time since diagnosis passes. Now except for all of the prompting and preparing I have to do and the social skills programs we work on, I think I am pretty much like most moms I know, so there is hope that one day you can stop hovering!

I'd definitely prefer AS to ODD! My son has a more classic incarnation of autism and he tends to exhibit quite a bit of ODD behavior and it is *maddening*. I knew my son was autistic before he was diagnosed, although I'm not diagnosed I realized long ago that I had some degree of HFA/AS and kept that realization as a personal secret, I fully expected my son to be Aspie, but he regressed and lost language so I knew he was autistic long before the doctor. I felt awful telling family because mostly they didn't believe me and I felt like I'd let them all down because my partner and I never wanted children but my son was a surprise and so far is the only grandchild on either side and they were all so happy when I had him, they were looking forward to watching him grow up but his behavior makes visits difficult and a lot of people often pull away where autism is involved....

For me by the time a professional had evaluated my son and I was sitting at a table with her and she said that yes he did indeed have characteristics consistent with autism, those words were a huge relief because I believed at the time that those words meant that there would be help for my son. The difficult emotional time came months before that when the director at my son's school sat me down and told me that she had concerns that there was something going on with my son that went beyond him having difficulty adjusting to the preschool environment. I broke down in tears and admitted that I had been wondering off and on if he had autism. I had never said those words out loud to another human being and it was rather cathartic in a way. The sadness was really because I just didn't know much of anything about autism and I was so scared. It is human nature to be scared of the unknown. I pretty quickly turned to doing research and figuring out what I could do for him. That is just me though. My way of dealing with a problem is to start hunting for a "solution". Different people react to life's difficulties in different ways. The director at my son's preschool said she was pretty amazed at how I handled it when she shared her concerns. She said that in 30+ yrs of working in education her experience in these types of situations is that parents react with denial more often than not. Unfortunately some people never get beyond that denial stage. I hope for your sake that your mother will get past that and be able to move on to acceptance but you can't let it stop you if she doesn't. I think for some parents, accepting that their child isn't "normal" is like admitting that they failed as parents somehow. Admitting failure is a damn hard thing for some people to do. As much as you may want her reaction to be different, know that you can't change it, only she can if/when she is ready to. Also know that there is nothing wrong with you. I hope your father's support will help you and your mom.

I guess it depends on how big a shock it is to get a diagnosis. Many parents probably suspect it already and then just need that confirmation but for my husband and I, it came as a complete shock. It was recommended that our son see a child psychologist/developmental paediatrician by his speech therapist and kinder teacher but because of b*s**t Australian laws and rules, no-one actually used the "A" word because legally they are not qualified to make a diagnosis so they just kept pushing. Eventually, because I was tired of the nagging I took him to a paed and well, based on the questions he asked, we sat for around 45 minutes talking about our son and then I thought "Oh my god, this sounds like Autism.." and that's was it...I have to say it was like someone pulled the rug out from under me, I couldn't believe what I was hearing. I cried...and I panicked. I knew he had his issues with obsessive behaviour and inability to socialise but I put it down to immaturity and being the youngest child at kinder. Anyway..that was 8 months ago and we are taking it one day at a time but I will say that I am so proud of him. Every day he goes off to kinder and he puts aside his obsessions and fear and he tries so incredibly hard - he's an amazing little boy, I love him more than life.

I am not sure what ODD is, so I couldn't say but I don't care what my son has or doesn't have, I just want him to have a happy and fulfilled life...

ODD is Oppositional Defiant Disorder. I don't know if my son is vindictive enough to officially have that label as in spite of the way he acts out he overall still has a very sweet temperament - nevertheless.... He often over reacts to a multitude of basic everyday tasks, if I want his teeth brushed I usually have to restrain him and do it myself as he'll only brush his front teeth, he takes a long time getting into his car seat and will struggle against you with all his might if you try to put him in yourself, when at home he often refuses to put his pants back on after using the toilet and if you put them on for him he will take them back off, he usually has a fit if anyone starts to sing or if you try to help him draw or write, he's the sort of kid who has no problem throwing himself down onto the floor in a public place yelling "no, help me! Ouch!" just because Mom and Dad need to move in a direction he doesn't want to go. I could go on and on and on.

for, it was a relief to get the diagnosis. He was almost 6 at the time, I had known for YEARS that there was something going on, and had NO idea what it was. I did think it was ODD for a while cause he is extremely oppositional and defiant. BUT that didnt explain the whole picture, just a part. At one point, I thought he had a multiple presonality disorder, as he could have completely different personalities at any given moment. SO< to hear Aspergers was sort of a relief!

I still struggle with "why my child" he was born with a cleft lip and palate, he has been thru enough and will go thru so much more, why such a little kid has to have so many issues is beyond me. But then I always think that he is otherwise healthy and that is the most important thing.

Your kid sounds just like my kid. He thrashes and has a fit if you try to wash his hair. I'm afraid he's going to hurt himself flailing around in the tub. He runs around pantsless at every opportunity and takes off running in public places.

I actually was relieved to get the diagnosis for him because I think if he gets help, he'll largely avoid the hell I went through as a misdiagnosed child in the '70s, with no family to speak of except a poor, exhausted single mom who was probably very sad that her kid turned out so weird.