A is for Autism and Anhedonia

Today we went back to the scene of the crime: the place where Graham was diagnosed on the Autism Spectrum 3 months ago. Okay, technically we were on a different floor, but same building. Same lobby. Same elevator.

Lucky for me we’ve been here a few times since. It’s near work. I have to dash in every now and then for something or other. When I go there I no longer feel that flashback-y feeling I used to. Now it just makes me sad. Nearly every kid you see is there for a “reason.” Maybe it’s a little reason, maybe it’s a big reason. Knowing I’m surrounded by families who are going through so much more than we are is strange and sad.

We had a Neurology appointment. We suspect Graham may be having some Absence seizures. While I filled out paperwork I saw a family enter. Mom, Dad, adorable little boy in a wheelchair. I don’t know what they were there for, I don’t know what was wrong with the boy, but I couldn’t help thinking, “They look so normal, those parents.”

Why would I think that? I’m not sure. But it’s hard to control that immediate subconscious reaction.

Perhaps we should have a uniform to recognize each other? A secret handshake? Or are we just supposed to clue in from the haggard look and dark circles under our eyes?

I saw this article today saying mothers of autistic children have stress reactions similar to soldiers in combat. (I’d say the same is true for special needs parents in general.) It’s a chronic, long-term stress, apparently. And it reminds me exactly why I’m back at work.

I couldn’t hack it. Apparently I would make a pretty crappy soldier because parenting was getting the best of me.

APA BlogDayBADGE 2011 A is for Autism and AnhedoniaToday is Mental Health Day and I figured I would come out and say today what I’ve alluded to quite frequently but haven’t exactly come out and stated.

Having an autistic child made me depressed. It wasn’t just that, there were a host of other factors, but parenting was the biggest one.

Before I knew Graham was autistic it felt like it was just parenting that was doing it. It seemed like something was wrong with me. I didn’t understand why I couldn’t enjoy my child the way other people did. It kicked in when Graham was around 9 months old, though it had been hovering in the background for a while.

It stayed for a long time. It got worse when I was home all day. And from December 2010 to March 2011 when I wasn’t working it hit some serious lows.

Getting Graham’s diagnosis helped. It was good to know that I wasn’t a total failure. But it didn’t fix anything. I still had the same day-to-day frustration.

When it was at its worst, I had some real anhedonia (inability to enjoy anything). I would think to myself, “What would I do if I could do anything I wanted?” And I had no answer. Of course I wanted time to myself away from the baby, but what would I do with that time? And what would it matter when that time would inevitably come to an end and it would be like it never happened the minute I walked back in the door?

I see a psychiatrist. I take medication. And I started working. Between these things it’s almost like night and day. Whether Graham has a good day or a bad one, I can always get myself a little bit of perspective. I can enjoy things. Now if you ask me what I would do if I could do anything I wanted I can give you a very, very long list. (Much of it would involve food and spa treatments.)

I love that postpartum depression is something we take seriously as a society now. It’s not easy to deal with and the ability to say you need treatment is important. Knowing it’s out there is key. But depression doesn’t have to be just right after birth. Being a parent, whether it’s for a special needs child or not, has a whole host of guilt and other shameful feelings attached.

I am still angry that I had the experience just like I’m still angry about Graham’s diagnosis. I do feel like I was deprived of a time in my life that could have been beautiful. But I’m proud of myself for being able to find a way out of it.

It’s hard to talk about mental health in everyday life. I guess that’s one thing I love about the blog is that it feels like a safe place to talk about it, even though I know full well that people I know read it. Having the conversation here makes it somehow less awkward for everyone. I’m trying to be better about breaking down that barrier but at least this is one thing I can do.

There are still people who think autism is a trendy diagnosis or a fad. They think it’s about lazy parents and obnoxious children.

Likewise there are still people who think depression isn’t real and doesn’t need to be treated.

They’re both real. And even if you just have situational depression like I do, it doesn’t make it less valid. If you need some help, get it. If you know someone who needs help, help them get it. Here’s to feeling better.

 

Are you an Autism parent? Check out my Resources page.

13 Responses to A is for Autism and Anhedonia

  1. Melissa says:

    Great article. Glad you’re joining in today for this – it’s my first year doing it and I’ll be doing it next year for sure!

  2. [...] Don’t Mind the Mess – A is for Autism and Anhedonia [...]

  3. Misfit Mommy says:

    Great post! I think the people that still think these diagnoses are ‘trendy’ haven’t had to deal with these issues in their own family, and should see first-hand the families that are affected by them before they pass judgement. –90;n mklp .l;’/L:9o=
    ’8p0=8ui]90plo;p['\=.klo.l/-\o0p[]-=poop[-099909,ml/i00op[

  4. Misfit Mommy says:

    Oops! Sorry, Jack got to the keyboard before I hit ‘send’!

    P.S. He thinks it’s hilarious that his ‘message’ got posted.

  5. JD says:

    You are awesome. Thanks for posting this. I know I missed the Blogging for Mental Health day by, well, a bunch of days. But I’m doing it anyway today. That is, if I can find thirty minutes for myself to actually write something.

    I have been hesitating to write about what I’ve been dealing with for the past two years because I live in a small town. People talk. I am going to write about it, but probably not put everything out there. I would love to, but I would need to be anonymous on my blog to say what I really want to say. Does that make sense? I guess I am a bit of a chicken.

    • Jess says:

      Yes, I totally understand. I have shared my weight on the blog but some things are rather off-limits. Like, you know, my husband and work and other such things.

      I think writing about it at all is a good thing and you can kind of gauge based on responses how it goes. Good luck with it! I will be by to read it for sure.

  6. Jen says:

    Awesome post! Stress like that is a big trigger for me and having a special needs child is stressful at times.

    • Jess says:

      Oh yes. Stressful. Guilt-inducing. Really sad. All those things together just make a person so cheery. I wish more special needs parents talked about it. Heck, I wish more people talked about it.

      And thanks for hooking me up with Mental Health Day. You were the one who introduced me to it.

  7. Susan says:

    Love the openess and honesty of this post Jess. So glad you’ve found what works for you! Lots of love to you and your family!

  8. Tracy says:

    Thanks for talking about this. I think you are right a lot of parents of Special Needs kids don’t talk about how they feel. My daughter was moderate MR, ODD, and had epilepsy. She passed from complications of epilepsy when she was 10. I was mostly a stay at home mom, but my husband was military so I shouldered most of my daughter’s care on my own. I actually hated it when people would tell me what a saint I was. I would get so frustrated some days, and other days I would just feel so tired and sad. I couldn’t tell anyone how angry I would feel sometimes that it was so hard. She had really great days too and I miss her very much. I always say I would give everything I have to just have one day with her,even if it’s one of her worse days. I think it’s important that you are talking about this. I wish more parents would.

  9. QVmom says:

    Thank you for posting this. I cannot remember the last day when I did not cry or feel sad. It goes beyond just sadness, more like hopeless. As I sit next to my son asleep beside me, it is still hard to believe or accept that I will probably never know what he dreams about. He is completely nonverbal and only uses a few signs. I feel so angry and cheated. It is rather like my child died, at least the “normal” happy little boy that I was supposed to have. How am I supposed to cope with this? I cannot just accept it and move on. I just try not to cry in front of my other kids. This is so unfair. Have you ever heard of ‘Welcome To Holland’? Well I’m still on the plane refusing to get off and now they have called the Air Marshall’s. I don’t know how everyone does it.

  10. Jenny says:

    I just came across this post – thank you for writing it.
    Many years before my son was even conceived, I hit a real low & sought help for Depression, acknowledging that I’d been suffering for years & needed help desperately. I went to counseling for months & started taking an anti-depressant, which I’ve been taking ever since.
    The 2 years since my son was born have been incredibly hard – I often feel that it’s just not fair that not only can I not be as happy as other moms seem to be, but it’s not fair that my little boy can’t be as happy as other children, that he has to work so hard & be so sensitive to so much. He had feeding difficulties for his first month – every mililiter & ounce of formula down was a victory, terrible colic for the first 3.5 months that I still ache over & has always been a total wild mood-swinger; I bounce around with his moods. The time since the Autism diagnosis has been the hardest time of my life & I know I really need to go back to a psychologist & probably start taking a different concoction of meds to cope with the ups & downs, but we’re still scheduling additional therapists & since waiting lists are the norm here, I don’t want to limit our availability with my own appointments.
    It’s reassuring to know that others also struggle – it can make you feel like a horrible parent in general when your child doesn’t seem as happy or isn’t developing at the same rate as other kids – having the Autism diagnosis initially relieves some of the guilt – but then there’s the guilt that comes with worrying that you’re not doing enough still.
    I’m told it gets better in time – but I’m really looking forward to when we have more settled & I can get the help I need.

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