[I want to thank Claudia at The Story of C for reminding me of the importance of my son’s financial future and for inspiring this post with her post here.]
What does the future hold for my child with ASD? One of the myths that I heard when I began sharing my son’s diagnosis with people I knew was that, because my son had autism, wouldn’t he be super smart? Or autistics are supposed to be geniuses! He will be fine.
Really? If that was true, why would autism be considered a disability? Wouldn’t everyone want to be autistic?
The question about my son’s future is one of the scariest questions in the repertoire of questions I ask myself. I do not like to look at this question or think about it or face it. It simply used to make me feel physically ill inside. And it was one of the first and scariest things I thought about when I received the diagnosis.
I’ve always been the lawyer who – when I received evidence against my case, either in trial or in pre-trial discovery – would groan, get depressed, and then all in the same day, hour, or minute, attack that evidence and rip it to shreds like a hungry pit bull. Why oh why then, could I not do the same thing with the part of my son’s autism that scares me the most? His future.
I saw some statistics last night. They come from a 2007 study done by Easter Seals sponsored by an insurance company. If you are interested in the report, it is located here. The study was intended to elicit how many of us ASD parents have financial planning in place for our child’s future. It turns out that almost none of us have done that planning even though we are four times more likely than the neurotypical parents to believe that our children will not attain financial independence, and we’re much more likely to worry about it.
I have felt guilty since before we got our diagnosis last year that I have not done anything other than set up and contribute to a 529 college savings account for my son. I do not know what kind of help or services he may require when he becomes an adult or if he will need them at all. But that does not stop me from worrying.
ASD children are vulnerable. There are definitely people on the spectrum who have exceptional talents and have managed to become successful and financially independent. This does not stop me from worrying about my own son.
He is vulnerable because he cannot read nonverbal social signals. He has an innocent belief in words in the strictest sense so that a metaphor may escape him. Maybe he will understand some of it all when he is older. Some ASD children do not. I don’t know now. What I do recognize is that because of this “blindness”, he could be a victim of misrepresentation or deceit. He could fall for all those advertisements for diet pill, weight loss, re-growing hair, making millions on real estate, or investing in a pyramid scheme and all of his savings (or our savings for him) could vanish.
I do not know the extent of his ability to get or hold a job. Even at his tender age, I know he has above-average intellect. But his short attention span, his over-focus on certain things and his obliviousness to others, his inability to take direction unless asked multiple times, are not characteristics to put on a resume. Take those deficits and add them to someone who is socially awkward at best and you do not have a recipe for success in the workplace.
I suspect he will have some close friends and a career that does not require a lot of social interaction. This is one of my less lofty hopes for him. Nevertheless, I think it is my responsibility to prepare for the contingent in which my son does not have the ability to provide for himself. It will provide me with some peace of mind.
None of us as parents, whether on the spectrum or not, can predict what will happen when our children grow up. But the odds for success in work, love and life are greater for those who are not burdened with a disability. That’s why we all feel good when we see a success story for a disabled person. I love watching and hearing stories about Temple Grandin, Jason McElwain, and James Durbin for instance. These are exciting and amazing people who happen to have autism. But they are rare. We all know that which is why there is a fascination.
I can’t look into my crystal ball and see what my son will be like at age 8, 11, 16 or 21 but I do have to plan now for the worst case scenario. I have to prepare myself if he is not the concert pianist, the basketball player, the surgeon or the author. I have to prepare myself if he is unable to reach the independence that a driver’s license could provide if he cannot handle the sensory overload.
I want my son to have the best of everything, to be safe and secure, or at the very least, to have a minimal supplemental, spendthrift income to help him when he needs it. It might be hard to face the scary stuff – but once you look scary in the face, pull it apart, and kick it a few times, it’s not scary anymore. I will always face down scary for my little boy. I will do it out of love.