Should You Join A Research Project?

The importance of asking lots of questions before you or your kids sign up to participate in research projects

Microscope, beakers and other scientific equipment

There are three givens when you have autistic kids – someone will ask if you’ve seen Rainman, an old man in a supermarket will lecture you about discipline and at some point you’ll be asked to participate in a research study.

Deciding whether you or your kids should do that can be tricky – on the one hand you want to do your part to help understand autism, but you’re also protective of your family and your privacy and would never want to expose yourself or your child to anything uncomfortable, harmful or invasive.

So let’s weigh things up.

The pros and cons of participating in research

The pros:

  • You might get to use new helpful therapies or techniques (for free)
  • You might learn something useful or interesting about yourself or your child
  • You’ll get data that you can use to monitor progress
  • You’ll help further the knowledge about autism
  • It can be fun

The cons:

  • It takes time and resources
  • Your privacy may not be protected to the degree with which you’re comfortable
  • You may not like the conclusions drawn from the study
  • You may not be happy with the methods used
  • You have to deal with strangers (and handing your child over to them)
  • It might not be fun

Reducing the risks

If you decide that research sounds like something you want to get involved with, to protect your family you absolutely have to check things out thoroughly before signing up. This means asking loads and loads of questions.

I’ve made a checklist to help you, it’s a free download called 62 Questions To Ask Before Saying Yes To Research Studies.┬áThese questions apply to any field of research, not just autism.

And meanwhile here’s what the research team should be doing:

  • Asking for consent – there’s no such thing as mandatory participation
  • Explaining everything about the study before asking for your consent
  • Inviting you to ask as many questions as you like
  • Having answers for all of your questions!
  • Never exerting any kind of pressure on you (this includes raving about how much better off you’ll be if you join in)
  • Allowing you to withdraw at any time during the study without consequence
  • Making you feel confident that they have a clear idea of what they’re doing and why

14 March, 2012 by Bec Oakley

Bec Oakley is an autistic writer and proud parent, with an intense passion for 80s text adventures, Twizzlers and making the world a better place for autistic people and their families.