How did it feel to find out your child has #Autism?



Today’s #Autism Discussion is about what you felt when you learned that your child has #Autism?

What was your initial reaction to hearing those words for the first time?
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For me personally,  it literally felt like my entire world was made of glass and had just been shattered. That the only way that I can describe it.

Please share your experience in the comments and hopefully by learning you aren’t alone, you’ll feel less isolated.



 

This is the best way I can think to describe what I felt.

 



 

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About Rob Gorski

Father to 3 with Autism and husband to my best friend. Oh...and creator fo this blog. :-)

  

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KarimanElgoharyShama
Guest
KarimanElgoharyShama

The way i explain it to others: when i found out about my son having autism, it was like my heart was ripped out and a ton of bricks dumped on my head. Grief and shock and then feeling utterly alone.

Rob Gorski
Admin

 @KarimanElgoharyShama I can totally relate. 

Rob Gorski
Admin

When I first heard about Gavin, it wasn't devastated because I barely knew what Autism was. When I learned about Elliott and Emmett, I was devastated because over the years since Gavin was diagnosed, my heart had been broken countless times seeing how he struggled. 
 
the 2nd and 3rd time around, I knew more and I was completely heartbroken from the start. 
 
In that one moment, it felt like all my plans for the future had been shattered. 

JenniferWhynott
Guest
JenniferWhynott

For me I was relieved. Granted my daughter has asperger's and is quite high functioning. I did not "lose" her in a way many parents with kids on the spectrum did. I was relieved because finally after all of my research someone with a degree validated what I knew for some time. There was a reason for all of her "quirks" (tantrums, eating, feelings). Now we are at a point of finding resources and trying to find a therapist that she can talk to that is covered by insurance and that we can afford that doesn't involove driving 1 hour… Read more »

Rob Gorski
Admin

 @JenniferWhynott your story brings up a really good point. How many people feel relief because you have finally figured out what was going on and what to do about it. Sometimes knowledge is power. 
 
Thanks for sharing 🙂

MelindaKGraham
Guest
MelindaKGraham

 @JenniferWhynott I was going to start with funny and I think I still will … Funny my husband & I share some spectrum qualities.  I can see how he came from us and how a mixture of our quirks lead to him.  He was not taken from us like so many others had happen he came into this world just as he is.  He is moderate to high functioning so my feelings probably would be very different should my experience been different. 

Rob Gorski
Admin

 @MelindaKGraham  @JenniferWhynott So many parents fail to recognize what you elegantly stated. Gavin was taken from us. He was like every other kid until he turned 3 or 4 years old. We put him to bed one night Gavin, and he woke up a different person. 
 
By the time we figured out what had happened, it wasn't devastating because we had already lost him. Now we learned the name of the kidnapper, so to speak. 
 
Thank you for saying what you have because so many people don't get that. 🙂 

Batty
Guest
Batty

 @lostandtired  @MelindaKGraham  @JenniferWhynott The children in the fairy tales that are taken away and a child of fairy left in the place is silent and tantrums–this is how autism was described from at least the dark ages on.  That is how my girls were.  Now when we talk about their childhoods, neither one can remember anything–so we say that when they were little they communicated in the language of autism and that is why they can't access those memories–they are in a language they no longer speak.

MelindaKGraham
Guest
MelindaKGraham

Relieved I knew he was special from the moment he was born and now I was going to keep figuring out how to make hislife the best it could be…just like any other child, just like my other son. I was so tired of people telling me it was because I wasn't parenting him right or if I'd just do this .. no leave me alone I KNOW my child I KNOW that I'm trying my best there is something special about Riddi that makes him see things differently that was it. We still struggle but each day is a… Read more »

Rob Gorski
Admin

 @MelindaKGraham Thanks for sharing. I can totally relate.

Brianne Lynn
Guest

I was grateful and relieved.  I knew that there was something different about him from the time he was a baby.  It was nice for someone else to finally confirm that I wasn't just some overbearing, over worrying mom.  As a parent, we know out kids best and when I did get that confirmation, all the naysayers didn't know what to say.  

Rob Gorski
Admin

 @Brianne Lynn Well said.

darqueangel
Member
darqueangel

I remember 2 reactions: relief and despair.  I was relieved to know there was a "term" for what was going on with her. I was in despair because there was now this label and I was left without knowing what to do next. 

DeeBrake
Guest
DeeBrake

 @whiterose i know what you mean. it is like being handed a certificate. congratulations we know the answer….. NOW WHAT…. that "LABEL" carrying so many stereotypes and expectations of struggle was hung around a small boys neck. i even asked the doctor… how shall i introduce him, now. "this is my son, he has autism?" she said…. say "this is my son" but  when curious eyes and people wanting explanations surround you, you feel like you need to pull on that label chained to his little neck and show them. Is that is all a label is good for, explaining… Read more »

Batty
Guest
Batty

FYI—there was a theory devised by Leo Kanner (who named "autism") in the 1950s (that was debunked almost  immediately but which is still being thrown up into the faces of parents even today): that of refrigerator moms.  Mothers who are so cold that they destroy the ability to feel emotions in their children and cause them to become autistic. Mothers compared to the SS and Nazi stormtroopers!   Even though it was proven that cold mothers didn't equal children with autism, others in the field of psychology, particularly child developmentalist  Bruno Bettelheim,  took up the hue and cry to promote their… Read more »

Rob Gorski
Admin

 @Batty Honestly, I think that firing them would be second on my list. I leave the first your imagination. 
 
Excellent point.

Rob Gorski
Admin

 @Batty Honestly, I think that firing them would be second on my list. I leave the first to your imagination.   

Batty
Guest
Batty

 @lostandtired I know–me too, but I have to remember that I am the only parent my kids have.  I don't think that visiting mom in jail is an effective treatment for autism or anything else–LOL!

fibromamaby3
Guest

 @Batty I've heard of this theory before, although never with the term "refrigerator moms". Why is it that no matter what we do, even though we are harder on ourselves than anyone else could ever be, they are always ready to throw us under the bus for this stuff? Geez oh Pete, we can't win.

DeeBrake
Guest
DeeBrake

there was a mix of emotions. first i felt an "I KNEW IT" relief. finally someone was going to tell me i wasnt imagining it. and immediately after i felt like "I SHOULD HAVE DONE MORE EARLIER AND FOUGHT HARDER" i felt like i failed for years at pushing harder to get my son the needed help, he DID have early intervention but it was like i was repeatedly told he was just a little quirky, and a little shy… but i KNEW there was more to it and never pushed hard (i have since learned that the therapy he… Read more »

Rob Gorski
Admin

 @DeeBrake Thanks for sharing. 

fibromamaby3
Guest

 @DeeBrake I felt like that with Emmett John. Like I shouldn't have spent so much time focusing on sign language (which ended up helping him learn to talk in the end). I should have fought harder for Autism based early intervention but there was no way for me to know.
 
Still, as mothers, we beat ourselves up over what we feel we should have done regardless of what we have accomplished for them. The unattainable goals we set for ourselves, huh? 😉

Rob Gorski
Admin
Alicia
Guest

As a writer, I found writing about it helped me.  For me, my reaction was too much to verbalize to loved ones:
  http://www.hippocampusmagazine.com/2012/04/passed

fibromamaby3
Guest

It's funny what I remember and don't remember. Not funny ha-ha, of course. With Gavin, I remember Dr. Reynolds saying, "Asperger's is difficult to understand. When he comes home from school and you ask, "Gavin, how was your day?" he's more likely to respond with, "I saw a red balloon." than anything relevant.    I don't really remember Elliott Richard's diagnosis. I remember filing out the questionnaire at his 1-year, 2-year and 3-year check-ups etc. because we were TERRIFIED that we would be blessed with 2 special needs children. Especially, since that was about the time things were initially starting to get… Read more »

fbhmom2two
Guest
fbhmom2two

Because of the road we'd traveled to that point, it was a relief to realize but came very late for help early on.  At 13, I've known our son was on the spectrum since he was 2; he was formally diagnosed THIS YEAR (2012).  Having always known, we were attending various therapies and groups for years.  What caught me off guard most was my husband's reaction.  He was always quite verbal about my assertions our son has PDD or ASD in a very negative way.    Being able to accurately and quite adequately relate events and hearing from my husband's… Read more »

fibromamaby3
Guest

 @fbhmom2two You know, with Elliott Richard Rob fought against his diagnosis at first, as well. I mean neither one us *wanted* the diagnosis but in the same respect, I was more accepting initially. Where it almost seemed to me like Rob felt if he fought long enough and hard enough that he could actually change the outcome. Not that he ever loved Elliott Richard any less or felt differently about him as his son. I'm just usually the one who is more accepting of diagnoses…perhaps because I have so many of my own.   I had completely forgotten about that…It's funny… Read more »

Rob Gorski
Admin

@fibromamaby3 @fbhmom2two I honestly don't know why that was. Maybe it was because compared to Gavin, Elliott seemed very, very typical.

fbhmom2two
Guest
fbhmom2two

@fibromamaby3 I often think of the wasted time arguing with my husband about 'labeling' and his reaction when he saw first hand how our son functioned in what hubs believed would  be a normal activity, easy peasy.   It was a soccer game – pee wee soccer – and our son had NO clue about team sports or collective thinking AND was nonverbal.  I thank God every single day for the coaches he had, patient and kind, and very, very supportive.  His teammates were frustrated by his inability to team play but allowed him space. Other parents, some quite competitive,… Read more »

Batty
Guest
Batty

 @fbhmom2two LIZZIE!  So glad you're coming out from lurking!  And I agree about the acceptance by family is so important–especially as there are so few children born with ASD who have no relatives with ASD traits if not diagnosed!  My family denied for years that anything was wrong with my daughters and still are not accepting of their oddities. Rob being negative about you suggesting your son might be ASD or PDD fits in with my experiences. The perceptions of men are focused on very different things than women when hearing diagnoses about their children–at least in my experience they do–I… Read more »

Rob Gorski
Admin

@Batty @fbhmom2two @fibromamaby3 for those that don't know, Lizze is my better half and wife of almost 10 years. I'm overjoyed that she is commenting as I love her opinions. 🙂 As far as me fighting Elliott's diagnosis, I wasn't really fighting it but more like questioning it. My basis for compassion of Gavin and Emmett. Gavin was clearly autistic and Emmett wasn't even verbal at the time. By comparison, Elliott seemed "normal". Does that make sense? I just didn't see things the same way as Lizze at the time. I thought that Elliott's behavior were more mimicked and some… Read more »

Batty
Guest
Batty

 @fibromamaby3  DNA based genetics was an infant science at the time and they had to blame someone or something and because they saw mothers who dampened down their responses(in order to prevent meltdowns) with children having flat affects unless screaming.  Kanner incorrectly assumed that that the mothers were the cause and the children the effect instead of the other way around.  Behavioral science was not in existence at the time and so cause/effect were not well understood in psychological terms.  Just another way to make us beat ourselves up.

DeeBrake
Guest
DeeBrake

 @fibromamaby3  Hi Lizzie, Yes as mothers we take a lot of guilt i think… i was always told NOSSD (not otherwise specified sensory disorder, for those, if any, who dont know) and because the twins were born premature and only 2 1/2 pounds each, they were followed closely by many doctors. So when Ayden failed a milestone it was noted and they questioned me about other things. i kept feeling like "they are hinting about autism, but my son does NOT have autism, it's something else". as time went on, my father kept asking if Ayden was deaf or partially… Read more »

kat13
Guest
kat13

It was a relief. Angie didn't get diagnosed until last year(she was 9), but always was suspected off and got great support from school without any diagnosis.
 
When the suspicion came across at the age of 2.5, it was huge feeling of fear with many unknowns on what is a head of us.  

MelindaKGraham
Guest
MelindaKGraham

 @DeeBrake  @whiterose I know what you mean and as my heart breaks and my eyes tear up all I can do is giggle as a wonderful memory comes to me.  We have a teenage girl Chelsea who is a good friend/sister to me.  She is a senior this year and she has a special bond with Riddick (6).  I sat down with Riddi & explained this year that he has autism that his brain works a little different than ours, because he couldn't understand why his classmates didn't do stuff the same as him!  She was talking about a boy in… Read more »

Rob Gorski
Admin

 @MelindaKGraham  @DeeBrake  @whiterose That's actually not the first time I've heard of someone passing out business cards like that. I think thats a great, noncombative way of dealing with the less than understanding public. 🙂

rebeccamagliozzi
Guest
rebeccamagliozzi

I was relieved, in a way. I had spent so many years not knowing how to help my son, who didn't respond to any behavioral interventions, feeling helpless and often blaming myself. It was good to know I really wasn't crazy- there was something wrong neurologically with him, despite all my family being in denial. I'm glad I found out, because it started me off on a journey to help him, and though it's been a long road he is making steady progress and catching up to other kids his age.

Silachan
Guest

When I found out about it in myself, I felt validated. Like there was a REASON i struggled with everything. I wasn't stupid afterall. I wasn't dumb, lazy, or your typical teenager. I wasn't just a weirdo. I was autistic, and that explained why I struggled with things that no one else understood. The pieces came together.   Now as I go through therapy, I'm finally gaining some of the puzzle pieces of my life that were hidden from me. I'm finding out more about myself, and just how much I became affected by the bullying, the misunderstanding, the ignorance… Read more »

lostandtired
Guest

@Silachan very well said. Thank you