What Autism Looks Like From Here

If you've seen one child with autism, you've seen one child with autism.

This saying is recited regularly within the autism community.  I hope to utilize my blog to humbly (I know I'm just one mama with small readership) to raise autism awareness.  It's such a vast disorder and we all try to understand it from those we know or hear about.  I'm chiming in with so many others trying to explain this disorder, but I can only speak to our experience.  Since each autism experience is unique to the individual, a definition or list of symptoms/associated behaviors may not help you understand my child. 

The Autism Spectrum consists of a handful of diagnoses including what is called Autism or Classic Autism.  This term and more recently Asperger's (which is also on the same spectrum) are the terms you hear most often.  Deane (and a whole LOT of other kids) are diagnosed as PDD-NOS (pervasive development disorder - not other specified) which is a sort of catch all for exhibiting similar characteristics of other spectrum disorders and is often a less severe form.  Our primary reason for seeking evaluation was Deane's language delay and some "quirks" in various sensory areas.  We weren't looking for a diagnosis, but we felt relieved to have a place to start.  Today, I'm grateful for the label to give us a frame of reference, but with so little understood about autism, the information and variety of opinions and views available are endless and of varying degrees of credibility.

Since getting diagnosed and immersing ourselves in this world, we now understand there are many more areas of Deane's life that are connected to this condition.  For example...
Sleeping - Deane didn't sleep through the night (except for a couple of flukes) until 13 months and continued to wake up multiple times each week at least once each night until about 32 months when we introduced a weighted blanket.  Chris has been the one to put Deane down each night and almost every time he woke in the middle of the night since I stopped nursing (around 9 months).  I made the weighted blanket, it was the least I could do.  (Knock on wood) The blanket has almost completely eliminated his night waking.

Deane sleeping on the boat; his naps are rare these days.

Speech - At 2 years, Deane didn't put together two word phrases. At 30 months, his vocabulary was about 50 words.  Today at 3 years, his vocabulary is in the hundreds of words, although you don't hear a large variety on a daily basis.  He remains very echoic (repeats what we say).  His spontaneous language development has been slow - most of its is related to a specific need or repeating information from a show or activity.

Visual - described here

Doing some natural environment work at the Quad Cities Autism Center

Hearing - Deane's tolerance of loud, abrupt noises has improved.  He resists (understatement) getting his haircut and we have heard from older individuals with autism that the sound of the scissors cutting is horrible with this heightened sense of hearing.

Eating - Deane is picky like many kids, but fortunately he love fruits and vegetables.  I have considered dabbling in the biomedical world with modifying his diet but I'm not there yet.

Textures/Touch - Before the last few months of occupational therapy, Deane had a huge aversion to squishy textures.  This has improved quite a bit.

I have so many photos of Deane on a screen; just seems it's one of the few times he is still.

Social/Emotional - Deane likes to play alone but will acknowledge other kids.  He does better with older children and adults since they tend to cater to him.  His limited communication makes teaching him concepts like sharing or "first, then" more difficult.  New places and busy loud environments can be overwhelming.  And places that require calm and quiet like church can be horrendous depending on the kind of day he is having.  His reaction can be similar to a small child (clingy, scared), ambivalent, tuned out, or full meltdown (like a tantrum except he doesn't understand what's going on).

Energy - I wasn't sure what to call this area.  Many kids with autism are also considered to have ADHD illustrated by limited attention span, can't sit still, etc.  We are recognizing that Deane has trouble keeping his body/nervous system comfortable in most situations where he's required to focus, interact, etc.  This may go unnoticed in typical toddler/preschool play, but it can also be illustrated by total lack of consideration for his bodily safety, inappropriate outbursts, needing to move away/take a break while focusing on something, etc.  Our work with Floortime therapy will hopefully help Deane to better recognize how to quiet his nervous system and regulate more appropriately.

Last week was our first week of reduced services, going from 21-22 hours/week to 9-10 hours/week.  I have embraced the natural end of Early Intervention services (at age 3) and decided to cut several more hours of services to focus on areas that have seemed fruitful, particularly play based therapy and real world experiences.  I think this will be healthier for our family dynamic and for Kate's development. We will continue to attend Quad Cities Autism Center (Applied Verbal Behavior Analysis instruction) and receive OT weekly, but the remainder of our intervention efforts will be provided by yours truly unless we introduce school services (this process continues).  It's very important to keep Deane engaged in order to make progress.  I will admit this is hard and some days it was nice to know a therapist would be showing up.

I'm sure reading through this list many parents could see their child described in some or many of these attributes.  This is one reason why it's difficult to determine that there is something wrong because you want deeply for everything to be ok.  This is also exactly the point...our children are much more like typical children than they are different.  It's my job to help Deane sort out these challenges so he can be all he was meant to be.