This is a HUGE question and one that I have spent over 15 years researching and exploring. There is no simple answer, but I’ll just jump into this pool of abundant information and try my best!
There are a set of logical steps that parents can take when determining the right therapeutic path for their child with isms. But remember, although parents may walk a similar path, each child is unique. Some parents may be able to skip a step or two; others may need to return to a step, while others may need to stay where they are.
At first glance, these steps may appear apparent. But my years of experience have shown me that many parents are actually drowning in information. So let me throw you a life-preserver and pull you over to the “steps.”
Obtaining an evaluation may seem like the logical place to start. But many parents swim back and forth and never stand on this first step to get a clear diagnosis. An appropriate professional needs to conduct an evaluation, because without one, it’s near impossible to know what to do next.
The more you prepare, the better the evaluator will be able to conduct an accurate assessment. One helpful resource is the Symptom Checker by the Child Mind Institute. By answering a set of simple questions, you will be presented with a list of possible disorders. This is not to be taken as a diagnosis, but rather, a place to gather information.
I highly recommend that the evaluation be conducted by a team of professionals who will look at the child as a whole and not starting with specialists. Mislabeling in the Classroom by Jenny C. Yip, Psy.D., illustrates how looking at behavior through one set of lenses can produce an incorrect diagnosis.
Once you feel comfortable with the diagnosis, take another step and examine treatment options. Every disorder will have a typical treatment plan, along with alternative options. This is where you, as the parent, should gather information from books, professionals, the web, and other parents to decide what is best for your child.
Unfortunately, just like swimsuits, there is no one size fits all. What your child will need and you will be “fighting for” will depend directly on your child. This comes down to you educating yourself, which in turn means information, information, information.
Things may progress well for awhile, but just as your child will outgrow her water wings, she may also outgrow her current treatment. You may notice that she is having new issues in school, with friendships, or when out in the community. You constantly need to re-evaluate your child’s treatment options. As she develops and changes, her treatment may also need to change.
Finally, if your child continues to have issues in spite of implementing a number of treatments, you may need to rethink the diagnosis. First, it is not uncommon for disorders to be comorbid, i.e., to occur simultaneously with another. When the first disorder is treated, a second one may now become more predominant. This chart from Cathy Bruer-Thompson illustrates how behavioral characteristics of different disorders can overlap. Again, this reinforces the need for a comprehensive evaluation by a well chosen team.
Second, as your child matures, her symptoms may change and you may discover that the initial diagnosis at age 5 is not holding true at 14. The point here is that if things are not going well, you may need to revisit a professional for a fresh observation. Step on up!
Now dry yourself off. You have successfully waded through the pool of special needs information. If your child does receive a new diagnosis, you now know what to do. Just jump right into the information pool, but remember to use those steps! There is a wealth of available resources. Don’t reinvent the wheel; take advantage of those who have been there done that.