To diagnose or not to diagnose

“So, should we get an evaluation, then?” is a popular question in my office.  For some people, getting a formal, comprehensive evaluation is an important aspect of feeling secure on the autism spectrum.  An evaluation includes looking under every rock, getting all the data, and making a formal pronouncement of diagnoses.  Alternately, for some people, particularly adults, they are happy to self-diagnose on the autism spectrum, and do not prefer a full evaluation. Ultimately, the question is: should you pursue a diagnosis, and if so, when?

Here are some questions to ponder as you sort through this important question, to diagnose or not to diagnose:

• Why does a formal diagnosis matter?
  • Sometimes we need a diagnosis for educational or treatment reasons, other times just for curiosity. Know your needs, know your personality, and make a wise choice.
  • Sometimes there is family pressure to get an evaluation. This is a very real concern, and should be treated with caution.  Be certain that you are pursuing an evaluation on your timeline, and that you are open to all possible outcomes.
• How old is the client?
  • Sometimes a formal diagnosis is helpful during the years that you access public education. Some schools offer an “educational diagnosis” while others require an outside “medical diagnosis.”  Some programs require formal documentation for access to services.  You may benefit from testing during the public school years to help with post-graduation access to services.
  • Some adults just want some insight, but decline a full evaluation. This is a legitimate perspective.  These clients often show up in my office for a consultation, state their case that they are on the spectrum, share their experiences, and ask for resources (books, websites), but don’t want a diagnosis committed to paper.  Sometimes these clients have very real reasons (threat of job loss or divorce! Insurance issues) for not getting a diagnosis.
• If you don’t do the evaluation, what happens?
  • A formal diagnosis may lend itself to access to scholarships, programs, etc. Without a formal diagnosis, you may miss out on opportunities.
  • If you don’t schedule an evaluation now, you can still schedule one later. You can choose the timing of your evaluation.
    • Please be very clear that TREATMENT and an evaluation are different. I routinely provide treatment to people who are on the spectrum, but have not had a formal diagnostic evaluation.
    • Let me be clear that it is my opinion that if you are raising a child on the spectrum, you have some level of obligation to find services for your child. I have met adults who were not treated as youngsters, and their outcomes tend to be less optimistic than children who received intervention earlier in life.
      • You can delay the formal evaluation, but please don’t delay the treatment!

Deciding about an evaluation is an important decision.  Deciding who will conduct the evaluation, when it will be done, and how you share the information are all important points to ponder.  Happy thinking!