Depression, Anxiety, and the Autism Parent

I read many autism blogs at this point- the autism "blogosphere" is very much so a community and I like to keep up with certain families.  I read blogs by both moms and dads and something struck me the other day.  In both of the autism dad blogs that I read, the dads are very up front about the fact that they suffer from depression.  They are both on antidepressants and don't hesitate to talk about it.  I have not seen many autism moms discuss this, which doesn't mean that it hasn't happened, I just haven't seen it.

Why aren't we talking about this more?  Because guess what?  I AM depressed, and I have been for quite a long time.  I know my husband experiences depression as well.  I know my autism mom friends are depressed.  Hell, I was having a horrible anxiety attack last winter, and one of my mama friends offered to pop by with some ativan.  It's just like that.  There are multiple studies and a bazillion articles about it:

http://www.ncbi.nlm.nih.gov/pubmed/23291799
Autism is associated with burden and stress for parents/caregivers of the affected child. The demands placed by the disability contribute to a higher overall incidence of depression and anxiety among parents/caregivers.

http://www.iancommunity.org/cs/articles/parental_depression

Most parents of children with disabilities or chronic health problems suffer a great deal of stress. There is evidence, however, that parents of children on the autism spectrum suffer the most stress of all. ¹There are several reasons why the stress of those parenting children with an autism spectrum disorder (ASD) is so high. All parents of children with disabilities must cope with grief, worries about the future, and the struggle to find and obtain appropriate services. Parents of children with ASDs face some additional stressors. First, they often live with uncertainty about what caused their child’s autism, as well as possible guilt (no matter how undeserved) over whether they did or failed to do something that led to their child's ASD.  Second, the core disability associated with ASDs is a social one. Most parents hope for a warm and loving relationship with their child. It is bewildering to find you have a baby who does not like to be held, or a child who will not look into your eyes. Parents adapt, learning to love the way their child loves, but usually not without having passed through some confusion and pain.  Third, no matter what their specific ASD diagnosis or IQ, children on the autism spectrum often have problem behaviors, from refusal to sleep to intense and frequent tantrums to extreme rigidity. These behaviors can make living with them day-to-day very trying and lead to another variety of guilt: the kind you experience when you are not feeling loving toward a difficult child. In addition, such behaviors strain the entire family, impacting sibling relationships and marriages.

http://www.autism.com/parent_stress

http://autism.lovetoknow.com/Impact_on_Families_of_Autistic_Children

Autism is an emotional roller coaster ride that begins before diagnosis and continues throughout life. According to a study published in the journalPediatrics, mothers of children on the autism spectrum frequently rated their mental health status as "poor" or "fair." They had a much higher stress level than the general population.

In addition to the higher stress level, many parents of children with autism experience the following emotions:

• Feelings of being overwhelmed
• Relief at having a name for the challenges their child faces
• Anger at their spouse, the doctors, or themselves
• Resentment of the child and guilt for that resentment
• Despair at the incurable nature of the disorder
• Guilt that something they did may have caused their child's challenges
• Frustration that the parenting experience they have is not what they envisioned
• Feelings of social isolation
• Embarrassment at child's behavior in public

Physical Impact

Autism also has an indirect impact on the physical health of family members. Anxiety, depression, and exhaustion all take a toll on the physical health of families with children on the autism spectrum. Stress can lead to lowered immunity, and sleep deprivation may result in difficulty concentrating, memory impairment, and other health complications.

http://www.ijdcr.ca/VOL07_01_CAN/articles/benson.shtml  This one describes our family right after diagnosis to a T:

Parenting a child with ASD requires an inordinate amount of time and energy and may have detrimental effects on marital relations (Piven, Chase, Landa, & Wzorek, 1991), attention devoted to other children in the family (Holroyd, Brown, Wikler, & Simmons, 1975) and career opportunities for caregivers (Gray, 2002). Parents may find themselves withdrawing from social relationships and recreational and community events (Boyd, 2002; Sanders & Morgan, 1997), the very activities that may serve to buffer the stress associated with caring for their child.

The literature suggests that certain resources reduce the stress parents experience in caring for their child with ASD. Financial support has been reported by parents to be among the most influential resource for reducing stress (Dunlap & Fox, 1996; Freedman & Boyer, 2000). Adequate funds allow caregivers to enroll their children in interventions that most appropriately target their children's needs and enable the parents to purchase respite care as needed (DeMyer & Goldberg, 1983; Freedman & Boyer, 2000). Support of one's spouse and relatives has also been associated with lower level of parental stress 

I could go on and on and on....I won't, but do me a solid- please click on at least two of these links, especially if you do NOT have a child with autism, or if you have a family member who has a child with autism.  It is so important to understand that this issue is very common- this is based on large, legitimate studies (even NIH tackled this one).  The stigma has to go- the issues we deal with on a day to day basis are not typical and it is not surprising at all that we are depressed and/or anxious.  It would be really weird if we weren't!!!

Honestly, when I was having extreme anxiety a few months ago I went to one of the practitioner's in my PCP's office who I don't normally see- I told him I was feeling really anxious, and he asked me what was going on.  I started my story, I have two sons, both on the autism spectrum, I work full time... he stopped me.  Shushed me really.  And told me he would give me a prescription for xanax.  Oooookay.  I mean that's fine, but then I looked at the script and the man wrote me for 80!!!!  Seriously- what does this say to you?  Your life sucks.  It is not going to get better.  Don't bug me.  OK, well that's what it said to me.  Who the hell prescribes 80 pills to someone who doesn't normally take a controlled substance?  And how much could I have gotten for it on the black market?  Kidding, kind of, autism therapies are really expensive in case you haven't heard.

I just felt like he was saying, ummm, yeah, this is expected, don't look for it to get better.  Not really the best bedside manner in my opinion.  Luckily, the anxiety eased up, and I have been ok.  I have also talked about my migraines here in the past.  I finally made it to the neurologist about a month ago.  When he asked about my stressers (yes, I snorted), he of course said, well duh, of course you have a headache.  What's with these practitioners- I feel like my health is being written off because of my kids' conditions.  I mean, I get it, I should have some headaches, but 20 days a month?  He agreed, not ok and we tried a maintenance medication, which also happened to be an antidepressant- effexor.  I will tell you, I have been on wellbutrin for several years now for my depression (I know, you are shocked, right?)- and we decreased this when we added the effexor.  This mama has been a freaking mess- and as an added bonus, effexor gave me heart palpitations- I couldn't get to a therapeutic dosage for migraine prophylaxis because every time I attempted to increase like I was supposed to, it felt like my heart was literally in my throat. And my depression has been much worse.  Enough of that.  Unfortunately, because I live the life I do, there is no good time to be a mess.  I mean in the past month, we lost a pet, I attended the birth of an amazing new family member, Jack had surgery, we had many appointments, I have been trying to cope with a very complex new treatment plan for the boys, apply for the stinking DDA wait list in 5 days or less, secure funding for the boys' summer care....you know, the usual.  But this month I find myself crying in a corner at the end of the day.  That's not acceptable.  And it annoys the crap out of me that it happened because I was finally making the time to address my headaches, which are also debilitating just in a different (easier to manage if you can believe that) way.

I guess my point is that it is really important for all autism parents to be open with each other about their struggles with depression and anxiety.  I think it's imperative that we know we are not alone, but I also think it's vital that those around us know that we are experiencing this stress (and apparently we need to educate OUR practitioners).  It is a big deal, and we all need help.  I think it's our responsibility as parents really, to address our depression, with whatever means necessary.  Whether it's therapy, medication, or both.  We are literally trying to move mountains for our kiddos on a daily basis- we need to be at our best.  We owe it to our kids to be at our best.  When the boys were early in their autism journeys, John and I would use the excuse that we had no time for marriage counseling.  How much pain and time could we have saved if we had made the time right from the start?  Right?

Feeling depressed, in any setting, but especially in these circumstances, is nothing to be ashamed of.  It's nothing that needs to be hidden.  But it does need to be dealt with.  Our kids need us.