Wednesday, December 26, 2012

Dual Diagnosis

A new diagnosis is hard, but that's what we've got for Lily: She has been diagnosed with autism, often called a "dual diagnosis" of autism and Down syndrome. For short: DS-ASD.

Autism often presents a bit differently in individuals with Down syndrome than in individuals without DS. Here are some things that we notice in Lily that indicate autism (note that one or some of these things don't necessarily indicate autism, it is the combination of all of them together):

~Sensory issues: Lily is a sensory-seeker. She doesn't respond appropriately to pain. If she falls and bangs her head, she often laughs. She loves tight hugs and being thrown around in the air. She is fearless, and that can be scary at times. She is still very oral and obsessively mouths objects all day long.

~She is picky about food textures. She doesn't like mushy food, such as oatmeal or ice cream. She needs to feel something in her mouth in order to try to swallow it.

~Self-stimulating behaviors ("stimming"): Lily has lots of stimming behaviors. Mouthing objects is a stim for her. She flaps her hands when she is excited, which is a classic autism behavior. She rocks when she is tired or upset and is trying to calm herself. She puts her head down on flat surfaces and rubs her hand on the surface to feel the vibrations. She will put her head down on the floor and bang a toy right next to it to feel the vibrations.

~She will stare at her hands (another classic autism behavior), as this picture illustrates:

~Lack of imitation skills: Lily has not learned to imitate. The ability to imitate is essential to learning.

~Lack of joint attention skills: This is the ability to follow another person as they point out and discuss an object of interest. Again, this skill is essential to learning.

~Apparent lack of receptive language: This just means that it does not appear that Lily understands most of what is said to her. After almost 18 months home, there should be no language barrier. She will occasionally respond to her name, but that is a relatively new skill and she does not do it consistently. I would say she almost never responds to it unless we are at home.

~Lack of expressive language: Although recently Lily has learned to sign 'more' to indicate when she wants something, overall she has very limited attempts at communication. Her language abilities are one of her weakest areas.

~Lily does not point to indicate when she wants something, nor can she follow a point from someone else.

~Zero imaginitive play. All of her play is sensory-seeking.

~Strange obsessions: For example, Lily is obsessed with turning over chairs and small tables. Once she gets something into her head, it is very difficult to redirect her or get her attention on something more appropriate.

~She all but completely ignores other children, except to try to hug them :)

Some things about Lily that are NOT generally associated with autism, and might be attributed to her Down syndrome:

~She is very snuggly and gives great hugs. She seeks out physical affection from adults, but is indiscriminate between us and strangers.

~She recently learned to enjoy peek-a-boo and that is now a sure way to get her to smile and giggle :)

~She does not have a problem with transitions. If another child takes away a toy she is playing with, she just moves on to the next one. She very rarely has meltdowns. In many ways she is very easy-going.

~While she does best with a routine, she is not thrown off by changes in routine.

So what now?? Well, Lily is already getting speech therapy, occupational therapy and physical therapy. We are now pursuing adding ABA (Applied Behavioral Analysis) therapy, which is the 'gold standard' therapy used for children with autism. It teaches imitation and joint attention skills, which are crucial for Lily to learn. Unfortunately it is often a fight to get insurance companies to pay for ABA therapy, so you could please pray for that to go smoothly.

In the meantime, we are just enjoying our sweet, giggly, cuddly wild-child... Lily Anna :)


Anonymous said...

If you haven't already, you should check out the blog The blogger has an adopted son with a dual DS and autism diagnosis too (plus 2 more kids) - her blog has tons of cute pics of her kids too!

Dianne said...

"Lack of receptive language..."

I worked with a teenager at one point that we considered evaluating for autism because he did not respond to his name more often than he did. Thankfully, we instructed him on appropriate responsive behaviors, and he received the instruction and put them into action immediately. From that time forward, he rapidly overcame the behavioral problems for which he had been put into rehabilitation.

I can only imagine how Lily's lack of receptivity in addition to learning difficulties challenge you on a moment by moment basis. I admire your commitment to and love for Lily as you try to raise her. Thank God that you can cherish her hugs, giggles, and smiles.

rosedel said...

I'll be praying for the insurance companies to understand Lily's need and open up the purse strings for you.

Jill said...

Thanks for sharing, Jess. That is quite a list and I can see our Jonathan in a few of them...I've started to wonder...Anyway, I do hope insurance will cover this for you.

Briana said...

I am sending along good thoughts and hope it will all work out. I have been diagnosed with high-functioning autism myself so if I could be any help to you please let me know.

rosedel said...

Hellloooo there. Any news on the baby? Lily? Insurance? I'm thinking about you all and hoping for good things.