Tag Archives: autism

Misdiagnosis

Remember last month, when Gideon tested positive for autism at the Kennedy Krieger institute and my sister's world crumbled around her? (No? Click HERE.)

Since Gideon's diagnosis, our family has been crazy proactive. We've read books on how to teach him, completely changed his daily routine, removed overstimulating toys from his collection and replaced them with educational ones, and devoted time daily to working with him. He's also been going to speech therapy twice a week for an hour at a time. In just this past month, these changes have had a huge impact. Gideon talks nearly all day, everyday now. Sure we still don't know what he's saying half the time, but he's engaging in conversation constantly. And those words he'd said before (hello, thank you, uh-oh, etc…) are now being used regularly at the appropriate times. He's using utensils to eat now and capable of matching colors, numbers, and shapes in puzzles or on command. And he's listening to directional cues (feed Elmo a cookie, go get the ball, turn off the train, take off your shoes, etc…). He hardly even misses the electronic toys that kept him occupied before.

Both of the speech therapists Gideon sees nearly laughed at the report Kennedy Krieger gave my sister, which stated that Gideon's abilities were no greater than a six month old baby (which means he was virtually doing nothing on the learning scale at all). After even just one session with him, they told my sister they weren't going to treat him as an autistic patient and rather a speech delayed boy. They advised my sister to take into consideration the fact that Kennedy Kreiger gets state funding based on the number of kids they diagnose per year and that a true autism test is a three hour session (which they didn't preform). So Rachel decided to get a second opinion through the early education program here in our county (they actually do the three hour test).

Yesterday Gideon had his second evaluation. Cognitive, receptive, social, and adaptive skills (motor skills) put him on par with a 24-30 month year old (he's 24 months old this week) and communication skills put him about 15-18 months (which means he is behind in speech, but that's it). While the early education program can't technically diagnose kids with autism, they said it's very unlikely he is autistic, just speech delayed. Because he's behind, he still qualifies to continue the speech therapy he's currently receiving and those therapists he's working with a sure it's just a matter of time before he catches up.

Basically, Gideon's a little flower that we failed to water. Now that we're dousing him with water, he's growing at a rapid rate. It's hard to admit, but we'd failed him until that terrifying news last month. And while it put a hard strain on our hearts worrying about his future, only now to find out it's unlikely it was ever really an issue at all, it was good we had that motivator to push us into doubling our efforts so he didn't fall further behind because of our own ignorance.

This news comes as such a relief to my sister and at just the right time. With another son on the way, she needs to reduce her stress level and enjoy motherhood. Yesterday was an answered prayer that was spoken by many. We're feeling rather blessed today in the wake of it.

I am more confident than ever that Gideon will continue to excel and that if/when Rachel has him tested again, they'll wonder why they ever diagnosed him autistic to begin with.

Thank you to any of you who have been sending positive thoughts and prayers about this for the last month. It means so, so much to us. 

Diagnosis

Gideon turns two next month and still speaks very little. Of the few words he’s said (hello, thank you, dad and deon (for his name), duck, etc…), he’s rarely said them again or on command. It’s not to say the boy doesn’t make noise, he walks around mumbling something to himself almost all the time, but he doesn’t talk. He’s not communicating his needs or desires or engaging in playful dialogue with his peers. And for all these reasons my sister has been increasingly worried that he may be autistic.

But I’d worked with autistic kids before and none of them, even the mildest of cases acted anything like Gideon. Gideon’s a ball full of happy giggles, totally okay with broken routines, amicable around strangers, and it’s not like he’s a mute. Is his attention span a little difficult to hold? Yes, but what toddler’s isn’t. Is he behind in speech development? Sure, but this is also something that boys in particular are often behind in. None of his behavior indicated autism to me.

Yesterday Gideon was tested for autism at Kennedy Krieger (one of the best institutes in the country for this test) and met all the criteria to be diagnosed with it. While they did say it’s too early to diagnose the severity of it (they can’t know this until ages 4-5), he is still classified as autistic.

My sister’s whole world crashed down around her over the news. In her 28 years here on earth, I don’t think I’ve ever seen her cry so much – it’s just not in her nature. My sister is strong to the point of coming off cold. She has a skin so thick she seems unbreakable in situations that would destroy a regular person. She kept saying things like: “What if I never hear my son say I love you?” “What if he’s aware of everything around him, but trapped in his own mind his whole life?” “I don’t want him to have to struggle; I want him to have a normal life.” and “This just isn’t fair.”

To see her fall apart so horribly unhinges my heart. I hate that I don’t know how to comfort her right now because I know all the positive, proactive things to say and do – I worked with kids with autism, I know what needs to happen next to correct any learning disabilities early on – but right now the pain is too fresh and these aren’t the things my sister wants to hear. Her fear for not just Gideon’s future, but the baby in her belly’s too now has completely consumed her.

As sad as it makes me that Gideon’s been labeled autistic, I am optimistic. I know that my family will do everything we need to do to educate him every day. I’m confident that after some actual one-on-one time, targeted to his weaknesses, that we will see improvements in his communication abilities. I feel like with work, he may completely test out when he’s tested again at 4 or 5 years old. And I know my sister will get to this positive place one day, but right now her worst fears for her child have come true. She can’t see past that at the moment.

When I was in college, working with special needs kids, I used to tell my mom that I thought I had such patience with them because God was preparing me for having my own special needs kid one day. Since there doesn’t seem to be a child in my future, I’m starting to think God prepared me for helping my nephew and I’ll gladly step up to the plate to teach my sister and nephew everything I know. I want her to have hope, to believe this won’t ruin his quality of life. And I, too, want Gideon to believe he’s just like every other kid one day. I just know that worrying about the ‘what if’s’ years down the road doesn’t help him today.

If you’re the praying type some supportive prayers for my sister’s family would be appreciated. Happy, positive thoughts are also welcome for those that don’t pray. My sister needs all the strength she can get to move onto the next stage in this diagnosis.