So, I’ve spent the past few days in a huge boiling vat of stress with my two youngest at home. The teen has autism, ADHD, anxiety, depression, sensory processing disorder and a learning disability, to name most of the letters floating around in her alphabet soup. I truly don’t mean to be sarcastic about it; in fact, I’m quite serious. While I do spend a lot of time trying to find SOME humor in what I go through, sometimes it just gets too out of hand and I can no longer do that, at least temporarily. My young-adult son has autism, ADHD, pretty severe anxiety, bipolar disorder and a touch of OCD which waxes and wanes here and there. Sometimes, things are much better under control and I have a handle on things and then things will happen and I will just about lose it with all the stress. This past week was just exactly that.
Years ago, I used to say something along the lines of, “My son woke up with bipolar today” or “This was an autism day”. There is such a distinctiveness between the behaviors that show up at any given time, it’s no wonder that being a parent of children with these conditions can drive you to the brink of a panic attack. [Having an anxiety disorder of my own doesn’t help]. To make matters worse, all of the different issues that come along with comorbidity makes it even more difficult to:
- Identify which condition is present
- Determine how serious the issue is (medication issue, sleep concerns, incident at school or work?)
- Decide if I am overreacting/reading too much into the issue?
- Figure out if there are patterns leading up to this?
So what exactly IS comorbidity? Depending upon how detailed you want to get, there are several explanations. The National Institutes of Health have a comprehensive study to peruse that goes into extreme depth if you want to know all there is about the issue. For most of us, like myself, there are less intense descriptions available, but it all boils down to one thing: If there is a condition like autism, there is a good chance that something else exists along with it. I had a years-long showdown with the non-medical individuals on my teen’s then middle school IEP team. The IEP chair INSISTED there was no autism where she was concerned (despite a diagnosis on paper from her toddler days), and it took an additional YEAR to get an independent evaluation for her in order to get them to add that to her diagnostic criteria for school services. Her desperate need to be correct wasted a year of my child’s diagnosis. So, proving comorbidity is a huge challenge for many families when it comes to all aspects of care: School, medical coverage, accommodations of all kinds, community services and more.
This flowchart above is a great example of what I’m going through with my teen. She’s been bullied to the point where her anxiety prevents her from speaking out in class (“you’re so stupid, why even bother answering?” or other laughter/mocking), so now she’s silent for fear of sounding “stupid”. The teacher now makes sure that they walk her through an answer, providing less of a teaching moment, the child is relieved and now the child will speak with friends and family with comfort and ease, but school becomes less interactive. It’s maddening. However, in a grossly overpopulated school, she is getting lost in the shuffle to the point of having failed, dropping a class just this week that she can’t handle and losing a credit for it. A vicious cycle that is not being addressed.
Where my son is concerned, despite medication and therapy, miscommunication, missed dosages of medication and other factors can facilitate the growth of arguments, severe anxiety or depression and ineffective communication that can cause great rifts in family cohesion and other growth potential. As a young adult, I want to see him gain independence, but when I see such gross lapses in basic judgement when it comes to things like finances and other major decisions, it can cause a great deal of worry about an inevitable future without me one day; one of the biggest issues for many parents dealing with children living with disabilities. The same applies for my teen.
Having a professional accurately diagnose and implement plans to deal with autism and other comorbid conditions seems to (well it DOES) take years to get into place. Along the way, great lapses in mental growth, education, social awareness and progress can all be stunted or affected by the stark absence of quality services. My son was turned down for a state funded early education program because the family’s income was too high. Later, I found out that we were well within the limits and a poorly trained phone rep looked at the wrong chart for family size. While devastated, there was nothing I could do but look at the years’ long loss of progress as something that couldn’t be helped. It would then take me eight years of my life (lawyers, crying, yelling, untold amounts of wasted time) to finally get him placed at an alternative school in my state that he would stay at until he received his high school diploma. I remember sending an email to the elementary school principal who told me my son would never receive a high school diploma, but a “certificate” due to the severity of his issues. I included a photo of him in his cap and gown holding his diploma. Felt good, but that’s about all I got out of that email. *smile*
So, what can we as parents or influencers of those living on the spectrum along with these other disorders do with all of these roadblocks? First, we can recognize that one size does NOT fit all children. There will be children with autism who will go on to be scientists and those who remain at home with their parents for life. That great diversity of results should not deter us from seeking out and working towards the highest potential for each child. All those years ago, a person on my son’s IEP team said to me, “I cannot believe that you would want to remove your child from his current setting among “typical” children and place him in a school with “all disabled children”. It was the best decision I ever made and made him the person he is today, a young man I worry about but am immensely proud of. Maybe I need to also send the photo of him in the cap/gown and diploma to those people who doubted him?