Thursday, May 30, 2013

A Final Diagnosis

I have a final diagnosis.

My youngest son was diagnosed with an Anxiety Disorder.

The doctor told me that though he did have features of autism, he felt that the underlining cause for all of his symptoms was anxiety. He clarified that this is something our son was born with and not something caused by his older brother’s rages. He said it was wired in him from birth and will continue to be a struggle for his entire life.

He also concluded that he does not have ADHD, which is something that the first neuropsychologist diagnosed him with. He explained that all of his inattentiveness and impulsiveness is due to his high level of anxiety he’s constantly experiencing. He said that my son’s anxiety is so high that it affects all aspects of his life, which would explain his sensory issues, his social issues, his rigidness and his trouble with transitions. He explained that his anxiety keeps his body so wound tight that it doesn’t take much to set him off, it can be a room of kids talking or a change in toothpaste.

When I clarified some of his behaviors the doctor said that it was sounding more like OCD, but he didn’t think it was necessary to give him that diagnosis since it’s also an anxiety disorder. Instead, he warned me to keep an eye on this as he gets older.

He told me that the problems we’re facing today will change as he gets older. At this age we may have trouble with him staying in the classroom, but as he gets older, he may refuse to date or even leave the house.

When I asked him how his restrictive interest in the game mindcraft (refusing to play with any other toys), his long monologs about mindcraft and his echoing of statements fit into the diagnosis of anxiety, he only said that he didn’t observe these behaviors during the evaluation and if it was autism he would’ve seen it then.

When I asked him about his monotone voice, the doctor acknowledged that he too picked up on that, but dismissed it.

When I asked him about how he has no filter and will tell teachers they are boring or other parents that he doesn’t like their kids, how he doesn’t easily engage in back and forth conversation, or how he walks the playground talking to himself instead of playing with other kids, the doctor admitted that our son has odd behaviors that can affect him socially and that as he grows these may become more apparent. He said that we may need to assess him again in 2 years to see if he has learning deficiencies in social skills. He referred to the newly created Social Communications Disorder, which according to John Elder Robison of Psychology Today:
Social Communication Disorder is described (in my opinion) as a sort of “autism lite,” where the person has some features of autism but not enough to meet the diagnostic standard under the new definition.
Robison points out the concern many critics have about this new label:
Here in America, it’s time to open a discussion about Social Communication Disorder and where it belongs. If it’s part of the autism spectrum or “autism lite” we need to make a decision about what services will support people with the new diagnosis. Otherwise we risk doing that population a great disservice – giving them a diagnosis that leaves them nowhere, with no indicated services or therapy.
So basically, this is just another label, but at this time it doesn’t offer much support.

In the meantime, the doctor told me that a certain amount of oddness is accepted because he’s still young. Unfortunately, his classmates don’t agree.

He then recommended a book called, Helping the Child Who Doesn’t Fit in. Here’s how the book is described:
Remember the kids who just didn’t fit in? Maybe they stood too close, or talked too loud. Whatever the reason, we called them hurtful names, and they never understood why. Now, clinical psychologists Duke and Nowicki call these children “dyssemic,” and offer some ideas of how to help them.
Dyssemic children cannot readily comprehend nonverbal messages, much as dyslexics do not correctly process the written word. Yet nonverbal communication plays a vital role in our communication with others, and children who misunderstand or misuse it may face painful social rejection. In HELPING THE CHILD WHO DOESN'T FIT IN, Duke and Nowicki show parents and teachers how to assess the extent of a child’s problem, as well as how to help the dyssemic child.
Our doctor also mentioned that the medication our son was currently taking, Prozac, is a mood stabilizer (this was news to me) and that even though he wasn’t diagnosing him with a mood disorder, it would be helpful if he ever developed one as he got older.

He then recommended regular therapy. He told me it will be a fine balancing act in creating an environment that’s predictable enough that it allows him to function, but also doesn’t become so rigid that it just reinforces his anxieties, something he said we’ll definitely need help with.

He also said that I should get occupational therapy through the school to help him cope with his anxieties while there. But unfortunately, my school has already denied him getting OT because he doesn’t have an IEP, something they denied because he isn’t 2 years behind. My plan was if he was diagnosed with autism I could go back for an IEP, but now I don’t know what I’ll do to help him there.

At the end of the appointment I asked the doctor which DSM guide he was using for his assessment, and he said, “I’m using the new DSM-5 and support it completely, I could go on for at least 5 hours about why I prefer it to the previous version.”

So what do I think of all this?

I have mixed feelings. I accept that he has an anxiety disorder, this came at no surprise since we already knew he had this. But so does 75% of children with Aspergers. What surprised me was that all of his struggles were based on anxiety and not Aspergers, especially since he had what our Neurologist described in December as “textbook autism spectrum disorder.”

Do I wonder if this outcome is because of the new DSM released this month and the fact that Aspergers Disorder as a diagnosis was removed? I would be lying if I said I didn’t.

It’s also possible that the old DSM was faulty and that kid’s like my son should’ve never been diagnosed with Aspergers in the first place.

I will always wonder, but that doesn’t change reality.

The reality is that he has anxiety. We’re already treating this with medication. We’ve been advised to get him therapy to help him cope with his challenges and teach him social communication skills so he can fit into society.

If he was diagnosed with Aspergers, I don’t know if it would be any different, except we would have more support and services available.

Either way, my husband said it best, “At this point it doesn’t matter what they call him, in the end it’s up to us to help him, and that’s just what we plan to do.


20 comments:

  1. Wow....just wow. Let me just say, you title this entry "final diagnosis" but for your son's sake, I hope you don't accept it. Yes, he is anxious--that's a big part of Asperger's.

    I also agree with your dh, that it's up to YOU to get your boy the help he needs. My dd was never diagnosed with Asp until 12, but I'd been treating it as such since she was 2. I am an OT, so that may or may not have made a difference, but I really didn't need or desire someone to label her. Only when the comorbid ADHD began to get too much to handle during puberty did I get "the big evaluation."

    Now it's left to you to explore all aspects of treating anxiety and whatever you see fit to treat as well. Never forget that YOU are the EXPERTS on YOUR child! Trust your gut and your heart and you will go far!

    ReplyDelete
    Replies
    1. I was wondering, when your daughter was assessed, did she talk about her special interest? What did she look like during her assessment? Our doctor didn't take into account certain features because they were not present during the exam, but they have been observed by MANY people in his day-to-day life. This is the only thing that feels unsettling to me. I feel like part of his symptoms were not part of the equation.

      Delete
  2. I can't tell you how much I appreciate you posting this experience - we are in a similar process with our 8 year old daughter. She too has been diagnosed with anxiety/mood disorder but there are so many aspects of rigidness and social oddness that look like Asperger's...All the best, Jess

    ReplyDelete
    Replies
    1. Thanks for sharing Jess. It is so frustrating. I just left the yogurt shop for a last day of school treat and we had to leave as my son went into a meltdown. We met a group of friends there and he refused to play with the other kids, they are “too boring“, he said. When he did interact, he didn't take turns well and was mean to them. I just don't know how to help him. He wants nothing to do with other people.

      Delete
  3. I don't know if she talked about it or not, but I had a lot of paperwork with boxes to check about whether or not she did certain things, and she also had to fill out stuff. I wasn't present when the interview was done and never questioned anything because I had been 100% sure for so long, that Asperger's was really just an add on diagnosis, since I was there to get a SPECT scan and an opinion of treatment options.

    I will add that Bella had been seen by a couple of people prior to the "big evaluation" who absolutely said "no way" to any autism spectrum disorders. That was very frustrating for me. Also, as she got older and dropped further and further behind her peers, the differences were more apparent.

    It's funny, as a toddler she was labeled a "genius" by some because of her big vocabulary and verbalizations, which were really nothing more than scripting from the enormous "search engine of a brain" she had. Now, at 16, she struggles to pass standardized tests in high school, and has no friends and is extremely anxious and quirky. No one tries to talk me out of it now. :(

    ReplyDelete
    Replies
    1. Thats one of my concerns, he tells me to come back in 2 years for another assessment, but by then we are 2 more years behind. If he continues to struggle socially, he'll fall farther behind with his peers and it will be harder to help him.

      Delete
  4. He doesn't have to have Asperger's to be in social skills training. Find a group (if you can) and sign him up for it!

    ReplyDelete
    Replies
    1. Good idea, I’m hoping his therapist can direct us on where to go.

      Delete
    2. Our YMCA has a social skills group attached to it. Don't know if that is universal or not.

      Delete
  5. My eldest son who is now 8, was diagnosed with bipolar and adhd. Along with all the dr's visits he attends play therapy every week and has been seeing this wonderful woman for 4 years now.

    We have also fought with the school to get him on an IEP since kindergarten and up until this year, they have refused us every step of the way. In a nutshell, they said that he was way too smart for an IEP and didn't qualify. I just wanted to pass along some references to you that were instumental in helping us get what our son needed at school, in the form of an IEP.

    http://www.wrightslaw.com/
    Great resource to start with.

    Wrightslaw: Special Education Law, 2nd Edition

    Wrightslaw: From Emotions to Advocacy, 2nd Edition

    Your son sounds like he needs the help in the classroom. What you need to do is show that there is an educational impact on his schooling in which to qualify. Read the laws, know them inside and out as the school will rarely tell you the truth about these things.

    Good luck to you and your family!

    ReplyDelete
    Replies
    1. Thank you! It's sad that families have to do this much to help their kids at school.

      Delete
  6. So much to say on this one because I displayed as a child many of the same symptoms as your youngest. The school actually required me to see a therapist. My mom took me once and then I refused to go again. I would deliver speeches to myself and would zone out. I never wanted to hang with kids my age....only my parents. I bring these things up because his anxiety diagnosis is just the beginning...who knows how it will change as he matures and hormones kick in. As always I am wishing the best for your family.

    ReplyDelete
    Replies
    1. Thanks for sharing In The Pink, I was wondering about different ways anxiety presents itself with children. I appreciate your concern about other things in the future. That too has crossed my mind since he already has depression and the doctor told us to keep on eye on mood disorders as he gets older. I really hope the therapy helps with his anxieties so we can get him more social with other kids. BTW, did you have OCD tendencies too?

      Delete
    2. Yes, I counted almost every step I walked ( If I lost track I would have a mini freak out) and would only wear long sleeves so I could cover my hand when opening a door. And I would not eat cheese for a while as a way to control something in my life cause the anxiety was awful.

      Delete
  7. I think your doctor is wrong. Your son has more than an anxiety disorder. Shame on him for being a coward.

    ReplyDelete
    Replies
    1. What do you think it is Meg? I spoke with him today and he'e pretty confident that it isn't related to autism, but rather a mood disorder. I was disappointed to hear today that he didn't even read all the notes I provided him which presented first hand accounts with teachers, school psychologist, relatives etc.

      Delete
  8. Mama Bear, I'm a 24 year old woman who chanced upon your blog a while back and have been following it on and off ever since. I just wanted to comment on this entry because your youngest son sounds SO much like me at his age! I also had no friends, walked around talking to myself, had a mile-long list of compulsive behaviours, developed obsessive interests, talked in a monotone, avoided eye contact, etc. I received some assistance for this but not a whole lot because my parents didn't want to push therapy on me (I didn't resist or anything, I just refused to engage with the therapists resulting in a lot of them just throwing up their hands...!) The consensus among them seemed to be that I had autistic and otherwise abnormal behaviours but they ruled out ASD because I "engaged in imaginative play" or something along those lines. As I got older I had head-banging wall-smashing tantrums at the drop of a hat into my late teens and may or may not have single-handedly given my mother anxiety disorder. Should I have been diagnosed? Would I have benefited from more intervention? Who knows, maybe, but I'm not here to talk about any of that, I just want you to know that I turned out "normal" in the end despite everything.

    (Whew, time for a new paragraph?)

    I think when you have special-needs children it's very easy to get used to thinking of them in terms of their shortcomings, always conscious of this or that that needs fixing or isn't like everyone else, but don't forget that your kids are still just that - kids - and as they mature they'll naturally learn how to handle their emotions, how to deal with people, how to manage their lives and so on - it's part of growing up! For me this was something of a slow process, and all my life people commented that I was "strange" or acted young for my age, and it's certainly true that I was pretty clueless for a damn long time and spent my early 20s figuring out things most people learn in high school but dang it, I got there eventually.

    I learned how to deal with people because the process of growing up forced me to come up against people again and again. I learned how to get a job by bombing interviews until I figured out what they wanted to hear (my first interview ever I think I said about 3 words, all in my old monotone, and stared at the table the whole time!) I learned how to make and keep friends by first making shallow friendships, then deeper ones. I learned how to be an adult because life forced me to use the skills I was bad at until I wasn't so bad at them anymore. When you look at it that way, growing up with some kind of disorder isn't so different from growing up for anyone else.

    As a parent it's natural to worry about your kids and when they're facing a challenge it's easy to start envisioning worst-case scenarios (and your doctor isn't helping much with his suggestions your son will refuse to date or leave the house... yeesh). I'm not here to give advice, in fact, I've never raised a child and haven't got the slightest idea what you should be doing, I just wanted to give you a perspective from the "other" side. Therapy, intervention etc. are useful but simply growing up will transform a child. Don't panic!

    (Sorry for writing a novel.)

    ReplyDelete
    Replies
    1. I love your comment, thanks for sharing, it's just what I needed to hear!!

      Delete
  9. I love your blog! I just wanted to let you know that thousands of parents of kids with various mental illnesses are discovering that it was caused by underlying chronic infection and related to immune system dysregulation. Anxiety, OCD, tics/Tourettes, rages, mood disorders, ADHD and autism spectrum disorders have all been found to be related to infections such as strep, Lyme, mycoplasma and chronic viruses, in some cases.

    Good online resources to learn more are latitudes.org/forums (to talk with other parents), www.pandasfoundation.org, www.pandasresourcenetwork.org, pandasnetwork.org, and the books Saving Sammy: Curing the Boy Who Caught OCD and Childhood Interrupted: The Complete Guide to PANDAS and PANS.

    Many parents have been able to recover their children from mental illness (not just treat symptoms). We've made huge progress on our son's anxiety, OCD, mood swings and rages by treating a previously undiagnosed Lyme infection, as well as some other chronic infections that had taken hold.

    ReplyDelete
    Replies
    1. Thanks for sharing, I have heard of PANDAS and PANS from my trips to Stanford's mood research team. It's exciting to hear about the research they are doing and how kids are being helped. Unfortunately, our son didn't meet the criteria, his symptoms were not sudden and acute, but developed gradually overtime. I would love to hear more about your story, would you care to do a guest post on my blog to share your expereince so other families can benefit from what you learned? If so, email me at the address listed in the sidebar.

      Delete