Recently I have read a few articles and posts on Autism Parents copying with sadness and depression. It seems that there is some research on the topic. Personally I think it is just a no-brainer and a natural reaction to your situation. Does that make it a good thing … well no … but something that is a natural way reaction to the situation that you have been placed. How you cope with it …. well that is another matter … and something that I hope to cover in later posts.
But for today I just want to cover some of the causes of sadness and depression. From talking to people I have come to realise that unless you are in this situation it is hard to get your head around some of the challenges and causes for sadness and depression that face parents of children on the spectrum. This list is not exhaustive and I would love to know if you think that I have missed something or have something to add (or subtract) from what I have included.
Causes of sadness and depression in parents of children with Autism
- First raising of suspicion of a developmental problem and/or autism – When the prospect of your child needing assessment for a potential development problem including autism comes up … it is probably going to be one of the darkest or lowest moments you will ever experience … and something that you will remember your whole life. You might have your suspicion that something is not quite right but when you hear outloud the words the first time … it is really hard. It is scary, sad and depressing. The uncertainty of what it means and what lies ahead is really hard. With that first step you also commence a period of loss. Even if you are fortunate and it doesn’t go further than assessment, it is something that is really hard.
- Waiting for Diagnosis – Diagnosis for some people can be a pretty quick process and for most people it takes months. This is a difficult period when you are in a sort of a limbo. You are aware that there maybe a problem, you are reading about the importance of doing things as early as possible … but you are told to wait. Generally if you go through the public system you can wait 6 months from when you commence discussions to being in the appointment doing the assessment. This is a long wait and is stressful and distressing.
- Diagnosis – Well. For us getting the diagnosis was a good moment … as it meant that we finally had the confirmation of what it was and a plan (as we had been investigating options for therapy) to move forward. However when you get the diagnosis and you see the measures … and see where your child is compared to other children their age … it is scary, sad and depressing.
- Abdication of Responsibility of Care by Medical Profession – I know they are strong words but IMHO one of the causes of sadness, depression and parental distress for parents of children with Autism is the abdication of responsibility of care by doctors (and I don’t mean individuals but the system). Let me explain. If you have a child that is diagnosed with a serious medical condition like cancer you are lead by the hand through with your doctors and specialists about what the condition is and how it will be treated. They provide all the necessary information to you and they give to the options … and make it clear what you should do. You are like a passenger in the process. This does not happen with Autism. You are not given the same guidance or assistance. While things have improved with the creation of the Early Days workshops and the Autism Advisors … it is not even close to what happens for other conditions. You must do the reading … you must do the research … and you must develop the program/path of treatment that you are going to do. I know that this made me very angry and upset. While I have the ability to read large amounts of academic material and condense that to help me make decisions … many people can not. I just think when you are grappling with the question of WHY in regards to your child and autism … this is just too much.
- Loss of Parental Expectations of Parenthood – I think for anyone who is a parent (or anyone that has even thought about it) you have an idea of what you think it means to be a parent and what you will do. Well for me … I know I had plans on doing things like language lessons (I always wanted my kids to learn the Italian), music lessons (big fan of the Suzuki method), sport and other activities. You think about mother’s meetings, friends parties and afternoon visits … I can’t talk for outside of the early childhood part but from my experience most of the things I had wanted to do are just not going to happen. Most of the things I wanted to do and share with both my children (even forgetting LittleMan’s difficulties … the therapy schedule is just too pacted … and therefore doing things with a typically developing sibling is also impossible). This is another form of loss … and it is sad and depressing.
- Difficult in engaging in normal social activity with a child on the autism spectrum – When you have a child with autism and you combine their potential sensory, communication and behavioural issues that may prohibit some social participation with the time commitment required for therapy … that can make participation in normal social activities difficult and limiting. This isolation can be a significant source of sadness and depression.
- Autism is expensive – It is very very expensive to have a child with Autism. Funding for therapy is IMHO non existent … and for what you can get you must be a whizz at paperwork. From my research when you take in all government funding (Medicare Programs, HCWA package, Health Care Plans, Medical Tax Rebates) and Health Insurance this covers about 2o% of direct costs. As a comparison with other medical conditions this is just appalling. For example at least 85% of direct health care costs for patients of cancer are covered by Medicare, government and health insurance (check out my post on Cost of Therapy – A Comparison between Cancer and Autism). Additionally when you look at how the PBS spends $100,000s a year per patient on drugs along for some patients the lack of financial support is just appalling. Many people raid all of their savings, sell their homes, empty their superannuation … do what they must to pay for their children’s therapy. This is really hard and something that most people don’t get. An for those that can’t do that … I can not imagine the sadness that it would bring.
- Work and career sacrifices – Aside from the expense of therapy, the main factor affecting many people’s income is the fact one parent, usually the mother, losses the ability hold down a permanent job. Particularly in the early years, one parent has a job and that is organising and coordinating therapy. Doing that is a job in itself … and it makes it almost impossible to do any work that requires you to be away from home. The loss of income especially when you have the additional expenses can be a cause of sadness and depression but it is more than that. It is the social aspect … it is the sense of achievement you get from working. Work is about so much more than just what you do and what you get paid. Loss of this can also be a source of sadness and depression
- Access to appropriate schooling – This is something that I plan on writing about. We are in the phase of looking at schools and completing applications. Well to be honest I have been doing it for about 12 months now and he is looking at starting in 2013. However the whole process can make you angry, frustrated, scared, sad and depressed. You know that your child may need some additional help but because of waiting lists and lack of funding/space you have to start this process so early you don’t know what they will need. By the time they go to school .. so you just have to apply for everything and hope that you have done it early enough for the eventual level that your child will need for when they go to school. Hopes of attending the same school of siblings (or if your family has a tradition of sending their children to certain schools) may also be impossible and another source of stress, sadness and depression. Schooling is something that I can’t help but be alittle jealous of my friends that have typically developing children. All that they have to worry about is completing the necessary paperwork and getting uniforms for the local school. The local school is a great place where they can learn and thrive. And I guess that too can be a source of sadness and depression.
- Battle Government Departments and other state-based mental health agencies for any type of appropriate services – This can be, especially in later years a significant source of anxiety, sadness and depression. I remember clearly when I went into the Medicare office the first time … I really felt like I was just reliving the a skit from Little Britain. With the limitations on funding and access to services sometimes it feels like it is a battle to get the little that you have been advised should be available to you. It can be confusing and depressing when to do so many things you have to become this scary person fighting like a mad person so that your child gets a chance to access to the services that they need.
What are your experiences? What do you think?