autism · diagnosis · Down syndrome

Tough News

 (Though linked to Adventures in Extreme Parenthood, I want to make it clear that the views and opinions expressed in this and all of my blog posts are not necessarily shared or even respected by members of the autism, Down syndrome or special needs communities. The information contained herein is for the most part, crap and subject to change because I try have an open mind. Because of that, there’s brainmatter all over my house.)

We had been talking for months. She had come to me via a support board with concerns about her 2 1/2 year old son. She was worried that he had autism, and wanted to know what I thought.

I had to tell her. I had to. I explained first that I am no diagnostician, and really, I could only tell her what I knew from my experience with autism. Every child with autism is different, for sure. But there are the same sort of red flags with all of them. We had talked in depth about those red flags. We went over the DSM criteria for autism at length. Communication, Social Interaction, Stimming.  But now came the moment.  I had to tell her.

So I drew in a deep breath and slowly and clearly said, “I don’t think your son has autism.”

A pained gasp. A long silence. Then anger. “You’re just like the developmental psychologist! His pediatrician! Sure he doesn’t have ALL of the diagnostic criteria, but I’m pretty sure those symptoms are going to show up ANY TIME!” Then she started to cry.   I wanted to comfort her. I wanted to hug her and say, “I’m really sorry your kid doesn’t have special needs.”  But when I thought those words, I almost started to laugh.

 This kid CLEARLY didn’t have autism. He was what happens when the parent helicopter flies ENTIRELY too close. He was spoiled. He didn’t want to play with kids because he didn’t want to share his toys.  His speech was fine for his age, but she thought he should be saying more words because she and her husband were so damn smart. No joke.  She kept trying to point out things that were “autistic” in him. She said that what I was saying, her pediatrician, and the developmental psychologist, and the Early Intervention team was “dangerous” because it got her hopes up too much. She knew she shouldn’t be hopeful. Dammit. One day she’d prove me wrong. Her kid did have autism.

Five years later. Her kid isn’t anywhere on the spectrum. She had to take up being a martyr in other areas of her life. She works hard at it, too.

I’ve had a lot of people contact me with worries about their kids. And I’m ALWAYS happy to offer my opinion but ALWAYS, no matter what I think, point them in the direction of Early Intervention to get tested. The people I’ve been in contact with usually they fall into three categories:

The first is parents who really do have valid concerns. These are MOST of the parents who end up contacting me.  Some of the time it’s just because their kid is a little, lets say, “quirky”. Other times they’ve eventually gotten a necessary diagnosis.  My heart hurts for those parents because I know how tough that was on me. The trauma of having your child diagnosed with autism is right up there with the PTSD felt by combat veterans. For reals. The study is HERE.

The second group is moms who are hyper-vigilant. They know too much. They google too much.They stress out entirely too much. They don’t want their child to have a disability, but they are scared to death that every little oddity in their child means something is wrong.  Usually their child doesn’t have a disability. These parents are GOOD parents, but maybe a little too good. They need to take a break from the worry and just enjoy their kids.

Then there’s this tiny group of moms who are certifiably nuts. It’s the smallest, yet sometimes most vocal group. They would never say it out loud, but you get this feeling from them that they secretly want their child to have special needs. They want that attention for themselves. They want a sweet special needs feather for their crazy cap.  Unless you’ve ran into one of these parents, you’re probably thinking I’m making this up.  Most of the time there’s nothing wrong with the kid that isn’t a direct result of having an insane mother.

Every time I’m approached with this, and it’s usually online (facebook, email, autism support groups) I make sure to tell ALL three groups that there is absolutely NO HARM in getting their child evaluated if they think something is amiss. I cannot stress my lack of medical background in neurology and diagnostics enough.

 Then I watch. Some get diagnosed. Some don’t. Then the third group rears their ugly head after NOT getting a diagnosis and flood my email box or the support groups with their rage. Because how DARE someone say that their kid doesn’t have special needs?! They go through a real grieving process, too, because there’s something NOT wrong with their kid.

I want to tell them to stop. To give it up. To be GLAD that they aren’t a part of this club. Sure, it’s FULL of the most awesome parents you’ll ever meet. But it’s not worth it. You don’t WANT this. No amount of attention will give you the energy you need when your child doesn’t sleep for weeks on end. The attention you get doesn’t clean your house. It doesn’t wipe feces off your walls. It doesn’t take away the pain you feel when your child is diagnosed. Or the pain you feel when you get bitten by said child.  It doesn’t make the countless therapy sessions less boring. It doesn’t make IEP’s any less sucky.

Just because your child doesn’t have special needs doesn’t mean they aren’t special. There are many other clubs you can join that are specially geared to  batshit crazy  parents. Have you seen Toddlers and Tiaras?

Friday is Special Needs Ryan Gosling Day over at Adventures in Extreme Parenthood. Be sure to go over and check out the other special needs memes. They are hilarious.  You can also find them on twitter at #SNryangosling. I’m on twitter now, too. Find me at @mostlytruestuff.

62 thoughts on “Tough News

  1. GIRL!!! I am a special ed teacher and I have a parent #3. Her child does have a disability but she tries as hard as she can to make it the most severe disability I have ever dealt with. Sorry honey, not by a long shot! As the sibling of a person with autism I just can't understand her mentality and she drives me freakin' NUTS! Why in the hell would you want your child to face these challenges??? The world is hard enough without crazy, extremist parents making it harder. I feel sorry for the poor kid 😦

  2. Right there with you, sister, I let myself down a few chocolates and maybe a little ice cream too, to feel better about leaving such an incoherent and odd first time comment. A little more ice cream and I'll be over it I think.

  3. Love this post and the poster! Everyone has their quirks and issues. However, I wouldn't wish autism, SPD, or anything on anyone. Like the precious poster, I'm also a sped teacher but I deal with parents who don't care. Rips me up inside. Thank you for being a great advocate for your kiddos.

  4. I once had someone tell me that their child with ADD (not severe, btw) was just the same as my child with a 299.00 diagnosis. He was nonverbal at the time and basically interested in feeling things with his feet and flipping the light switch. Fast forward two years (and 20-40 hours of therapy a week later, counting school) and he's made TONS of progress. But, yeah, it ain't the same. At my house, we call those people "knee deep in the cray cray."

  5. I've cried a lot about my son's dx, but overall, I try to be positive – he's such a cool kid, and he's come so far. But at first, I felt like my world was crushed. And that his was too. Until I realized that he was just fine, and it was us that needed to change. We could help him develop skills that he needed (maybe? we're still working on it), but he's happy and smart and just…different. That said, I totally realize that we're in the shallow end of the pool, and that I can speak for my son and our experience only. And I'm not trying to sugar coat it; some days blow. I don't really wonder about what O's life would be if he was typical, because he wouldn't be my boy. I recounted a story up yonder somewhere about a friend who said her kid's mild ADD was as severe as my kid's autism. While it ain't a competition, I still wanted to punch her.

  6. I was one of those parents who contacted you about my son and then got hooked on your awesomeness. :)Funny that you posted this because I've just been wondering if maybe I'm crazy and he's just "quirky". Som days are just so…. normal! Like this week, when he watched Curious George (du-di-ous- ORGE!) try to hibernate like a bear. He built a cave in the living room, said he was a bear named Bear, and pretended to hibernate. Curious… do you think SPD is over diagnosed as much as ADD or ADHD?

  7. i see these three "camps" of parents a lot. they seek me out too, because i have a child with severe (low functioning) autism AND i am a clinical psychologist so they think im some kind of expert, but i've been a sahm for 7 years so i actually have no brain left. i had a very good friend who was one of those borderline "munchausen by proxy" types… just wanting so badly for her daughter to have special needs as an attention and , in my opinion, an excuse as to why her parenting style wasn't working. She didn't want to bring the hammer down on anything from sleep to behavior and ended up making her perfectly typical child all kinds of messed up but never getting a diagnosis. She was so angry when she did not get her ASD diagnosis and our friendship stopped when i agreed with the doctor and let her know nothing was "wrong" with her little girl. It was sad bc i missed certain parts of our friendship, but what made it sadder was that she had a perfectly "typical" little girl and messed her up psychologically for life. thanks for your nhonesty in posting this.

  8. This is too freaking funny! I laughed at I'm sorry your kid doesn't have special needs. I'm still laughing! My in laws thought I was in the third category with my son. They didn't believe us when we told them that our son has Cerebral Palsy. Once they had a mri shoved in their face and an official diagnosis, they finally accepted it. Your post got me thinking, did they think we made it all up for the attention? It makes me wonder what they thought of all the therapists and specialists that we see? I think I should prob leave that one alone.

  9. Then there's the batshit group of mothers who do have a child with special needs and want to compete with other mothers who have kids with special needs, as though there's an award for the Most Screwed Up Kid or something. I have met too many moms who act as though their child is the most severe of any child to ever be diagnosed with whatever condition they have. Maybe they're the group #3 moms who wind up with kids who have SN. I definitely think group #4 are the moms who milk their kids' diagnoses for as much attention as it can possibly garner for THEM.

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