Diagnosis Autism

Yesterday my two-year old was officially diagnosed as being on the Autism Spectrum.  I have suspected this for over a year, so in a way this changes nothing.  And everything.

My husband and I chose a specialist at a well-respected Children’s Rehabilitation Center.  The whole way there I was a big bundle of nerves.  At check in I found I had lost my voice, and felt myself choking up when they were asking me simple questions like, “Name?”  I found myself relaxing when we entered the amazing lobby.  A train table, fish tank, dollhouse, leggos, other assorted toys, an ART THERAPY table, and even a Music Therapy teacher playing guitar!  The center treats a wide variety of medical conditions, so some children had physical concerns, others were there for cognitive reasons.  I looked around the room at all the other children, my heart going out to them.  I wanted to scoop them all up into one big hug.  I have always cared a lot about special needs issues.  I felt such a kinship with the other parents, like we were all in this together, in our common crusade for our children.  Some sensed that kinship and returned my smiles, others didn’t make eye contact and seemed alone in their pain.  I prayed that one day they will be in place where they can feel comfortable reaching out for support… but maybe not to strangers.

First we saw a Speech Pathologist, who asked, “What can I help you with today?”  I found this annoying.  Didn’t she read our chart?  SPEECH delays!!!  I was hoping she could tell us WHY Percy had speech delays and tell us if he did indeed have Apraxia.  Turns out that wasn’t really her thing.  *sigh*  So she did an evaluation and told us what we already knew, he had speech delays and needed to continue speech therapy.  What I didn’t know was that his RECEPTIVE language skills had caught up some and he was understanding at a 22-month level (he is just over 2).  Yaay!  I just hope insurance pays for this or I will kick myself for making that portion of the appointment.  Percy was pretty good during the meeting, a little agitated at the small room, but she distracted him with bubbles.  He LOVES bubbles.  After 30 minutes he was so DONE and I was looking forward to letting him decompress in the wonderful lobby.

We only got to be in the lobby 5 minutes. *sigh* I have never been UPSET that the doctor called us too early before.  I was really afraid that Percy did not have adequate time to recover from the first session, but thankfully we went to a room with some cool toys and pretty quickly a nurse came in to talk to us.  She was very compassionate and gentle and knowledgeable.  She observed Percy’s behavior and wrote a lot of notes.  At one point Percy became very engrossed in peeling the paper off a crayon, so much so that he did not respond when we called his name.  I was glad she got to observe that behavior.  We began to discuss his meltdowns and she mentioned how difficult it was to deal with them in public when other people are watching and judging.  I teared up, “I KNOW!!!” I cried.  She told me she had a patient who took a sign to the store that said, “My child has Autism” just to fend off busy-bodies.  I wrote down the name of my blog and asked her to please read the post “Choose Compassion”, because I knew she would appreciate the story of a mother struggling alone on a airplane with a small child who had Autism.   That story still makes me cry.  I gave her a big stack of papers, including a copy of the Assessment by Early Intervention and Percy’s hearing test, and after about 15 minutes she left.    

We had to wait for what seemed like forever.  I found myself wishing that we could have waited in the lobby.  I love that lobby.  Percy had grown tired of the toys in the room so he started stimming and running in circles around his Dad.  Then he accidentally discovered that the examining table made a cool resonating sound when you kick it.  Circle Dad, kick table… circle Dad, kick table… circle dad…  I wished the doctor would hurry up so he could see all the circling and kicking … and make it stop.

Finally the nurse came back, accompanied by the Doctor.  The nurse had a CARS rating scale with her and started asking me some more questions while the doctor and my husband observed Percy.  Once she was done with her scoring the Doctor took it and said, “Your son is definitely on the Autism Spectrum.”  That’s it?  No tests, no puzzles, just a rating scale?  It didn’t seem terribly objective or scientific.  What if I had exaggerated my answers?  I was then informed that the doctor had also just gone through all the papers I had given him and taken them into account as well, and that was one reason why he took so long.  Percy’s CARS rating is 37.5, “Moderate”, even though he is high-functioning.  This is in part due to his excessive sensory seeking behavior and meltdowns.  They did acknowledge that it is a bit subjective and that the rating could be different depending on the day it was administered, but it is a good starting point.  More than once they commented that they see really good building blocks and hope for rehabilitation since he has moments of clarity and focus and can make good eye contact and reciprocate our emotion.  They reccommended that Percy have an IEP developed and start attending regular special education preschool classes as soon as possible .  He will also need an IEP when he enters elementary school.  I have an education & psychology background and have spent some time in the schools so I know what all this means, and it felt very overwhelming.

So there it was, finally, the truth I had known in my heart for a year, and yet it still caught me off guard.  My son has Autism.  I fought off emotion as they continued to talk to me, wishing they would hurry up and leave so I could have a good cry.  The Doctor finally excused himself, but the kind nurse stayed.  She gave me a packet of information, but stopped as she was explaining it to me, gazing into my face.  ”It is okay to cry now,” she said gently.  “No,” I insisted, “I want to wait.”  “No”, she prodded, “don’t.”  And so I cried, and she teared up with me.  She handed me back the documents pertaining to the knot in Percy’s cord at birth, saying that if he had suffered oxygen loss it would have affected his motor skills.  I had to laugh.  Percy is amazing physically adept, so I guess he doesn’t have any issues there!  After a few more minutes she left us, saying that if I ever needed anything I should not hesitate to call her.  

Finally we were all done.  I was so proud of Percy, he did amazingly well and was such a good boy.  No tantrums, and he was pretty cooperative.  We let him play in the amazing Lobby of Fun for about ten minutes before we left.   I wandered around the room in a haze.  It felt so strange, because the last time I was in that room my world was a little different.  NOW I was the parent of a child with Autism.  I still felt like a lie to say those words, so I texted my sister to practice using them and see how they felt:  “Percy is Autistic”.  

I wasn’t ready to talk to anyone yet.  We stopped at a fast-food place to get some food, and I asked my husband to call my Mother while I was inside to let her and Thomas know that we were on the way home.  I knew she would be sad with and for us, and I did not have the strength to deal with her pain also.  Selfish me.  While I was inside ordering food I stared at everyone’s faces.  They all seemed so happy, so content with their lives, so oblivious to the world around them.   I felt like I was carrying this burden, this secret, that separated me from everyone else in the room.  Inside I was saying to them, “My child has Autism.”   “Did you know my child is Autistic?”  Those words still felt foreign to me, and I was struggling to incorporate this new truth into my reality.  

Today I am tired and numb.  I still have moments of weepiness.  My husband is perplexed by my reaction to our appointment.  He actually asked me, “Why are you so upset?”  He has been very supportive during this whole process but at times we have have differing opinions on the subject.  For example, he said of yesterday, “They said he is on the Autism Spectrum, they didn’t say he was Autistic!”  Isn’t that the same thing?  Besides, I heard the Doctor specifically say that he was giving Percy a diagnosis of Autism.  I know enough about Autism to have some understanding about what it means to have a child on the Spectrum, how it will change our life.  My husband says this changes nothing, it just gives us clarity of focus.  He is partly right.   

I am still glad at how things turned out.  If they had told me Percy was totally neuro-typical and they couldn’t help me I would have been upset.  In general we were VERY pleased with the facility and the staff.  Everyone was exceedingly kind and compassionate.  This makes easier the knowledge that I will be traveling there alone next week with my oldest, Thomas, for his evaluation.  More time in the amazing Lobby of Fun!  Part of me feels more at peace now, because I finally have an answer as to why Percy struggles.  I also have a specific community to turn to for support, and know what resources are available to help us.  The online Autism Awareness groups have been very welcoming to me in the past, but I always felt a bit like an outsider since my son was undiagnosed.  Now I have a place where I belong and can get support, now I have a clear battle to fight.  I am the proud Mother of a beautiful child who also happens to have Autism.