How to get a diagnosis of SPD?

by Mary Beth
(East Aurora, NY)

I think that my 8 year old daughter has SPD. She is in special ed and receives speech therapy currently through our public school system. After learning about SPD through a friend, I am convinced that this is an issue for her.

I spoke with her teachers at school and they asked the school OT to spend some time with her. The OT also agrees that she is suffering from SPD, though she did not do a formal evaluation. They are going to be doing re-evaluations on her next month for her special ed and will include something for SPD by a different OT but stated that an OT could not actually diagnose SPD. The OT that I spoke with does not feel my daughter needs OT because she can just informally suggest some tools for my daughter to use at school. I think my daughter will need OT outside of the school setting and I don't really know what to do next. I don't think my pedicatrician knows about SPD because when I called and asked for a referral for an evaluation they referred me to an audiologist for Central Auditory Processing disorder.

Who actually provides a diagnosis of SPD? An OT, MD or another specialist? Who should I turn to next or should I just wait and see what the school has to offer? My concern is that they may help my daughter with issues related to the school setting but not the home setting. For example, her clumsiness and avoidance of loud sounds and large crowds.

Any suggestions? I feel overwhelmed and confused!!!!

The SPD Help Line Answers...

What you are going through is by no means unusual, unfortunately. I am sorry you have had such a rough time. But, I must say, I am impressed with the knowledge you already have and how your questions are right on track! You should feel good about that, for sure.

First, I do want to try to clear up some of the confusion you have regarding who can, and should, diagnose SPD. It is, and can be, confusing when working through the school sysem regarding an SPD diagnosis and treatment. The information you got about the OT not actually ("officially"" diagnosing your daughter and only informally suggesting tools, but not "treating" her is basically correct. Allow me to explain further.

Not all OT's are experienced in officially evaluating a child (or adult) for SPD and I am glad she told you this. Also, many school systems, unfortunately, do not "officially" treat SPD as the treatment for, and effects of, SPD is bigger than what many/most schools are able to provide right now. And, the official treatment, as far as I am concerned (to get the most intensive treatment and that which will make the most difference), belongs in a clinic or facility outside of the school system. Then, certain accommodations can be made within the schools, but the main treatment taking place outside of the school system.

That said, what you DO need to find, that you were correct about is an OT outside of the school system to officially diagnose ad provide some intensive sensory integrative OT for your daughter. What you will be looking for is a "SIPT Certified OT. The articles I am listing below should help you not only clarify this, help you know what to expect from and evaluation and treatment, but also direct you to the resources you need to find one. Please read the following articles (and follow links in them)...

What is Occupational Therapy

How To Find An OT For SPD

What You Need To Know Before Starting Sensory Integrative OT

Ah, just as you suspected... your pediatrician probably does not know what sensory processing disorders are. This is also not uncommon (although it is getting better)... and you will now have to make a choice. You can walk through this with him, educating him along the way as you become more knowledgable (if he is open and willing) or find a new doctor. It think it is extremely valuable to have a pediatrician who is on board and on the same page for the overall treatment and care (but, I understand, where you live and your insurance may affect this). See what you can do there. I would certainly locate the SIPT Certified OT (through the article linked to above), THEN give that person's information to your pediatrician for a spefic referral to the OT you want. I pray he is willing to give you that referral... If not, you SURELY need a new doctor!

Two other things...

First, you are right, your daughter will most likely need OT outside of the school to deal with the "non-academic" issues that my be related to SPD, as you said. Usually, an initial schedule (depending on the specific issues and severity) may be 2-3 times per week for a few months, then less as you implement a sensory diet and other recommended treatments at home, and any recommended school accommodations or modifications. I would definitely get rolling on setting up the SIPT certified OT evaluation, as they are also having the special ed meetings, etc. Sometimes it takes a while to get in and get all your ducks in a row (insurance, referrals, an appointment set, etc.).

Second, know that if your daughter has any possible auditory processing issues/delays, your doctor would have been on target with that referral. I don't know if she does, but CAPD is very common with SPD kids. Jus be alert and aware of those signs (do an internet search of symptoms of CAPD to be sure).

I hope this has been helpful. I apologize it took me so long to respond... life is chaotic right now! Read those articles I suggested and let me know if you need anything further. Also, you may want to join a parent support group we have online to get more informaiton, resources and support from others who have walked a similar path. Click here to find out more about the AllAboutKids SPD online support group.

Keep up the great work and fight for your girl. You are right on track!! We're here if you need us. Anyone else have any comments/suggestions?? Feel free to respond below. Any help would be greatly appreciated from mom!

Take good care.
Michele Mitchell