When parents first discover that their child has an Autism Spectrum Disorder, they may experience an emotional struggle that looks something like this:
- Denial: "Surely the doctors have misdiagnosed my child. He may be a little odd, but I have a hard time believing he has some kind of disorder."
- Anger: "Why is this happening to me? What did I do to deserve this."
- Bargaining: "Maybe there's a cure!"
- Depression/Guilt: "I must have done something to make this happen."
- Anxiety: "I don't even know where to start in dealing with this."
- Acceptance: "This could be much worse than it is. I think I'll be able to handle it."
It's natural for moms and dads to get angry with themselves, each other, teachers, doctors, and even the child himself. Parents are trying to make sense of what has happened.
Moms and dads need to allow themselves to experience whatever emotions they are having. It's all part of adjusting to the challenges ahead. Trying to deny or minimize how hard it is to have a child with an Autism Spectrum Disorder only prolongs the fear, frustration and anxiety.
No matter how much you do for - and with - your Aspergers (high-functioning autistic) youngster, you're probably going to feel some guilt. In part because no one knows what causes or cures this disorder -- so anything you did could be at fault, and anything you do could help. But guilt can be crippling and can even get between you and your ability to be your best parent. The following tips may help you to take a deep breath and set guilt aside, at least for a moment:
1. Guilt-induced thought: "I can't leave any stones unturned!"
What if that new therapy you just read about was THE therapy -- the one that would have cured your youngster if only you'd tried it? No one wants to think they denied their youngster a cure for a lifelong disability. But remember that one-on-one time with a loving adult is always a plus -- and it's unlikely that that new high-tech "cure" is the next penicillin!
2. Guilt-induced thought: "I should be learning more about Aspergers!"
There's always more to learn. And if you live in a metropolitan area, there are always seminars, support groups and events to attend. But there's more to life than Aspergers -- and it might make sense, just for once, to hire a sitter and go to the movies with your "significant other!"
3. Guilt-induced thought: "I should be making time for my other children and my spouse!"
If you're the primary caregiver for a youngster with Aspergers, you may be too overwhelmed to give other family members the time and attention they crave. While it really is important to make time for others in your life, it's also ok to ask for a few minutes to regroup...take a walk...or otherwise clear your mind. Your children and spouse deserve your focused attention -- something that's tough to give when you're still in "therapy mode!"
4. Guilt-induced thought: "I should be pushing for more _____ (fill in the blank) for my Aspergers youngster!"
Depending upon what you read or who you listen to, you'll hear conflicting advice about what your youngster needs. More inclusion or less inclusion; more or different therapies; more or different activities, play dates, and so on forever. But even a typically developing youngster can get overwhelmed -- and an Aspergers youngster needs fewer transitions, less intensity and more structure than most. Maybe you do, too...!
5. Guilt-induced thought: "I should be spending this money on therapy!"
You broke down and bought that new jacket -- and now you wonder why you didn't spend the money on therapy...Aspergers books...learning toys...or something else for your Aspergers youngster. But your youngster is only one member of your family. You worked hard for your money, and your youngster will never miss that one extra session of therapy!
6. Guilt-induced thought: "I should be spending this time on therapy!"
You picked up a book while your youngster was watching TV -- and now you feel guilty. After all, every second counts, and you should be engaging him all day long. It's a nice idea, but even supermom can't be on call for her youngster 18 hours a day and still stay sane and healthy. Remember that your health and welfare count too!
7. Guilt-induced thought: "I should be working faster!"
Publicity about the importance of early intervention has caused a panic among moms and dads. The suggestion is that there's a window of opportunity early in life -- and that that window closes sometime around age three. The truth is, though, that children (and even adults) continue to develop and grow. While early intervention is important, it's not the only key to your youngster's ongoing success!
8. Guilt-induced thought: "I should give up more for my youngster!"
It's true that some families give up everything for their Aspergers youngster. They mortgage their homes, give up their careers, and end any "extras" to pay for therapies. This is, of course, a valid choice. But not every Aspergers youngster needs such a high level of commitment to thrive and grow. Your decision needs to take into account not only your youngster -- but you, your spouse, and the life you've chosen together.
9. Guilt-induced thought: "I somehow caused this problem!"
We know that Aspergers can't be caused by a lack of love. But was it that tuna you ate when you were pregnant? The vaccines you allowed your pediatrician to give your youngster? Since we don't know what causes Aspergers, it can be easy to decide it was your fault. Chances are, though, that genetics -- something you can't control -- plays a significant role!
10. Guilt-induced thought: "Other people do more for their Aspergers youngster!"
And other people are thinner, fitter, richer and have bigger homes too! Comparing yourself to other families can be helpful if those others offer support and ideas -- but it can be destructive if it leads to a constant sense of guilt.
11. Guilt-induced thought: "I'm probably making a bad problem worse since I don't know about autism spectrum disorders."
You are not in this situation because you are a bad parent or lack the skill in raising a son or daughter. You may lack some of the skills necessary for raising a youngster with Aspergers, but this is not surprising given the level of complications that kids with Aspergers may bring.
12. Guilt-induced thought: "I don't know if my child will be able to make it out there in the real world as an adult." Your child has a purpose in this life. And since the Aspergers-package comes with strengths -- not just challenges -- you can expect to see your child do great things someday.