No Moment of Zen – Research about the Stress of Raising an Autistic Child

When you and your partner become parents, you lives change – there are new paths to travel, new experiences to make and new challenges to master. It is a very exciting, joyful and demanding time! You try to balance taking care of your kids with tending to your partnership and maintaining your personal growth. After the first major life adjustment and some subsequent readjustments (most often another child or a change of job situation), you find an equilibrium that works for you and settle into fine-tuning while you watch your children grow up… EEEEEKKKK. Stop right here! If you have a child with special needs, your reality will look VERY different…

Becoming a parent of a child with ASD, means living on the fault line of personal balance. While there may be glimpses of equilibrium, you know that the next earthquake is just around the corner. And while you get better at shatter-proof construction – at least in some parts of your life – there are some tremors that are just too huge to really be prepared for. Plus, as with most things Autism, there is no guarantee that what worked today, will work tomorrow and that your gains will still be there next week.

For a family affected by Autism, there is not the occasional single occasional crisis to overcome, but life is a string of disasters and the State of Emergency becomes a permanent way-of-life. Just like the Autism does not go away, the distress does not either. And while we “grow with our tasks” and learn to cope, we also – sometimes slower, sometimes faster – deplete ourselves with this life-style: as parents, as partners, as individuals.

There is a lot of research out there about what a diagnosis of ASD can do to your family, your partnership and to yourself – from the initial diagnosis to the long-term daily survival. I thought I would give a short overview, so that other families affected by Autism can see that their feelings and experiences are more common than they might think…

There are many first reactions to the diagnosis, but the most typical are: relief (there is a name for it, I am not a bad parents), devastation (this is a life sentence, my child will never be independent), helplessness (where do I go, what I possibly do to help), anger (The doctor must be wrong or Why me) – and any combination of the above, I assume.
As we are all well aware, men and women generally react differently to a crisis, and the same is true for having a child with autism. There is considerable and consistent evidence that mothers experience greater impact than fathers.

Fathers often state that the child’s condition had no significant effect on them personally (or, at most, only since their wives feel stressed). Nothing could be further from the truth for the mothers. For us, it is all – and nothing but – personal. One of the reasons surely being that mothers are the parents who are most likely to be held responsible for their child’s behavior, both by their husbands and by people outside the family. Most often it is the mom that experiences the struggle to get a child dressed, faces feeding issues, transition melt-downs and bears the brunt of humiliation on the play ground while the husband is at work. (And there is no way to describe these battles in words that can do justice to the feelings of frustration, anger, resentment and utter defeat. This inability to share these experience often causes deep disconnect between the partners).

The stress of mothers raising a special needs child is not only well documented, but also obvious, if you ever met one or are one! And Tonmanil estimated an even higher level of significantly elevated stress levels being experienced by two-thirds of mothers. Many require psychotherapy and/or medication down the road. A study by Bromley found over 50% screened positive for significant psychological distress (this was associated with low levels of family support and with bringing up a child with challenging behavior).

Another big difference between mothers and fathers is the adaption of guilt over having created a child with special needs. For most fathers a diagnosis only changes their attitude for the future (i. e. not wanting more children, in case they also have ASD or adjusting expectations and college plans), most of them don’t look back or feel guilty about a diagnosis that can’t be changed anyway. At the same time, I don’t think there is a single autism mother out there that hasn’t at least once played the game of “Where did it go wrong?” and looked into the many theories about Autism causes (age, vaccines, pollution, pitocin etc) and said “If that’s really the cause for Autism, my child’s problems are all my fault.”
And since this feeling of guilt is a FEELING and therefore irrational as well as – in the eyes of most male partners – completely nonconstructive and energy-draining, this point becomes another battleground connected with Autism, where non-validated feelings might lead to marital tension. I will talk about the stress of raising a child with ASD and its effect on marriage in my next blog!

Advertisements

3 Comments

  1. February 26, 2010 at 4:11 am

    So true – great post. The mother is usually the one who is always around the child (or hearing about the child at school from a teacher) when they are have meltdowns and difficulties. May I also suggest that some of the husbands are also on the spectrum and this contributes to their appearing unaffected by their children’s condition. My husband’s family has a number of people on the spectrum and they are so used to it, they think it is the way everyone behaves.

  2. February 28, 2010 at 6:29 pm

    After reading you site, Your site is very useful for me .I bookmarked your site!

  3. Vijay S Mane said,

    November 6, 2010 at 6:05 pm

    I’m very lucky to have an autistic son(5 yrs old).You reach the highest form of infinite power spirituality.I thank my autistic child.


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: