Wednesday, 11 June 2014

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:
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.
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.
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.  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 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.  


  1. Yes I do have depression at times but I also suffer from a condition called PMDD which makes it much worse. My sons school and his therapists will occasionally ask how I am. Its nice to know others worry about me as well as my son. My significant other and I have contemplated trying to conceive so I have decided to take myself off my birth control pill and my prozac. I am going through some crazy emotions lately.

    1. Oh wow- well good luck and hang in there!!

  2. Thank you! Yes, I also have two sons on the spectrum, they are young men now and I worked full- time as a teacher. In between the time my son- younger one has moderate AU with ADHD- my older has Asperger's- my husband, their father died of a sudden heart attack, I have been on disability three times from work due to stressors- as a matter of fact I am on disability now, hopefully I will be able to manage and not be on disability in the future, my Mother died two months after my husband, I have seen a psychiatrist since my younger son was diagnosed- I still do today- I take two anti-depressants, Lexapro, and Wellbutrin, Xanax, Lisiniprol for high blood pressure, Lately, I had to add two more specialists on my list of doctors for myself- a neurologist and a orthopedic doctor for my physical pains that I feel were brought on by my mental pains. Because my sons only have one parent, I am trying my best not only just to stay alive, but to stay happy, alert, energetic, advocate, supporter, calmer for my sons-this is why I always tell myself and others that care for others you must take care of yourself before you can take care of anyone else. Although both of my sons are adults now, 22 and 18. For the 18 year old, I had to go through the process of guardianship which was hard for me to declare my son "incompetent" when I don't know how he became that way..I know that he could not live independently. On the other hand, my son with Asperger's attends college, lives on campus, makes the Dean's List has no social skills and doesn't care to have any. He is fine with that, but I am not. I know in this society, you must have emotional IQ (EQ) just as intellectual IQ to become successful in this life. This experience has made me a better person all the way around and as of now, I have no regrets. Thanks so much for this well needed blog.- Carmen G.-

    1. Thanks for sharing your story Carmen- sounds like incredible stress! I am so glad to hear about your older son (other than the social skills issues of course), will keep you and your boys in my thoughts and prayers

  3. Perfect timing. I'm starting an autism spectrum group for caregivers at my work ( I work at a uni ) and I'm amazed by how many people I've connected with in 3 short months since I started the group. We're actually talking today about making time for our circles of support (relationships immediate and extended) and how we sustain that. Blogs are great, but getting time in a room full of people who nod their heads when someone shares their story is also powerful. However we can, connect. Support. Share knowledge. (And I shared your blog with our group.) Thanks!

    1. Thanks for the share! Sounds like a great group- the only ones I have found around here are more intervention based for the kids- a secondary benefit is parent support of course but nothing dedicated just to that

  4. At least in my country, seeking for a shrink means you are crazy and it's a huge stigma, that's why the majority of the people won't even mention it.

    If you are a mother is even worse, you are expected to give up everything for your children, that includes your own health (physical and mental) and any sign of weakness gives you the immediate tag of a "bad mother"

    It sucks ... I've been depressed for years, but I'm not open about it with my family or friends. I'm a closet-psycho-autism-mom ... so to speak.

  5. This is so RIGHT ON. I have struggled with depression all of my life, but NOTHING like what happened after getting my son's diagnosis. I went on Prozac, then when that stopped working, I went through a host of other antidepressants until Cymbalta. The stress of ASD is over-the-top and I am convinced that is a big part of the reason I now have high blood pressure, as well as fibromyalgia. You just cannot have this much stress in and through your body and not have something happen. My dear husband also struggles with the frustration and discouragement of having a son with ASD. It doesn't help how overwhelmed I get by the end of the day. ;-)
    I am fortunate that I have two older daughters 13 and 18 who help with their brother and help me to stay sane. I think the hardest part of ASD parenting is the unknown. Am I making the right choices for his school? His therapies? Do I need to push harder? It is so hard when my energy has been zapped for 6 years solid. But I always keep going.
    Thank you for sharing your experience and the reality of parenting with ASD.

    1. Totally agree with your assessment and I feel the same about my migraines- so much worse since the boys were diagnosed

  6. Thank you thank you thank you! It is so hard to be open about personal difficulties - I recently just started blogging about my feelings of grief associated with my son's diagnosis. I so appreciate your openness and candor on this. Brave and heroic!

  7. I did a very radical thing to try to save my family. I walked away from my career. Yes, after 2 degrees and teaching for 15 years, it was the only option to save my sanity. Money is tight, but we are surviving. It was the best decision I have made so far in this journey. Everyone told me not to, but I just new it was what I had to do. At this point, I don't even know If I could do my job properly. I am stronger now, and family life is so much easier. Sometimes the best caregivers for our children are their actual parents. Where is the government funding for that?

    1. Luckily you have that option. Single mom's don't.

      And also, not every parent is the best caregiver for their children ( just sometimes, as you said), I know I'm not. I don't like children in general, I'm not patient and I'm not trained as a teacher, therapist or anything of the sort, so without the "escape" valve of my job, I would really go insane and take my son with me...not a good idea. but in your case, I'd guess you have somebody to support you and also you are a trained and experienced teacher!, that's sounds great. I'm glad you have the chance to do it.

    2. Why have children if you don't like them? Giving up a career is not an easy choice for anyone or the right one in your case. Wouldn't want you to, "go insane and take your son with you." Your words not mine. For me it was the best alternative for depression and anxiety medications. Sometimes radical decisions actually do help people, like moving or giving up a job. Being a teacher doesn't make me a good mother either. Giving up my job gave me back some of the control that I lost since my son's diagnosis. It was an empowering decision. That's all. I didn't choose for my son to struggle but I could choose this. My point is don't be afraid to do something radical like moving, or staying home, or homeschooling, or trying a therapy that everyone thinks won't work. Take back the power that Autism holds over your life, and you just might be able to free yourself from the depression, and desperation that you feel. It might not work for everyone, but if you are out their considering a big change, my advise is go for it and don't look back.

    3. Blanca, your candor and honesty are refreshing. Many people may not enjoy children in general, but love their own children. I agree that the mother may not always be the best caregiver. Sometimes a dangerous and unpredictable , out of control child (especially one that has become too big and strong to control) needs a fully trained hospital staff that work in shifts. They can be objective, whereas Mom and Grandma can be emotional. Autism is not some unique, enriching difference that we all need to honor, applaud and celebrate; it is very debilitating and must be contained. I would say more but am feeling too fragile to be judged.

  8. Thank you! My son was diagnosed in January, after my husband and I trying to convince about four different doctors that yes, he is autistic. Then after that uphill battle getting him into ABA took several tries, being ignored, and moving states to get decent care. We FINALLY got him in ABA and he starts next week, but I thought I would feel better after all this was done, but really it is not done. Now comes the therapy and learning how to handle all this. I have done research but everything we have tried has not worked. Now we will really learn and I am ready for all this, but I am scared, anxious, worried, and not at all sure what to realistically expect from therapy. All this to say thank you for typing all this out. My migraines are getting more frequent, my anxiety is getting worse, and I just plain feel awful. I need to make sure I take care of myself too.

  9. Autism is most problem for our life so i like your share about depression and autism:
    depression and autism