Ok…..I have professional and personal insider knowledge I thought it may be helpful to share and if you’re like me and do better knowing exactly what to expect, then this article is for you. I’ll tell you what to expect from start to finish when taking your child to a developmental assessment and what to look for in a provider when selecting where to go.
Taking your child for complete developmental testing means you’re taking them to a specialist which means you’ll need a script (sometimes called a prescription or referral) from your child’s pediatrician/family doctor/PCP- whoever sees your child for well checks and sick visits. This may be the professional who suggests you take your child to a developmental specialist, or you may bring it up to them. If you encounter resistance getting the referral, stand your ground. You know your child best but if needed, ask your child’s ST/OT/PT to write a letter explaining the signs and symptoms that are being seen that warrants the referral. They’ll be happy to do that for you, I’m certain 😉
The doctor will send in the referral to the specialist’s office. Your Dr. may have one that they typically refer to, but you can also do your own research and decide where the best fit for your family is and ask for a script to be sent wherever you want. You may not hear back right away from the developmental specialist’s office (sometimes a Developmental Pediatrician, Developmental Psychologist, etc.) as they will sometimes need to send a questionnaire back to the PCP’s office for additional information. If it’s been a week since you know the referral was sent, I’d go ahead and call to at least make sure they have the script and are working on getting your child set up even if they aren’t ready to schedule yet. Remember also to ask about any authorization that is needed for insurance for your visit and I’d also call your provider directly to inquire about benefits and coverage. Remember it’s ultimately your responsibility to be diligent with anything that involves insurance. I’ve learned that the hard way!
Let’s pause and I’ll give you my tips for what to look for when finding the right developmental professional to take your child to and what questions to ask while you’re looking. Remember that some of these tips and this description of the process applies when you’re taking your child to a specialist due to concerns with Autism. There will be differences if you’re going for other reasons.
– For an Autism assessment I would suggest one of two setups:
1) a 1-appointment, multi-disciplinary team assessment
2) assessment done by one professional over the course of multiple testing sessions
This is both my personal and professional recommendation. It does not suggest that doing it another way is the wrong way. I feel that a one-time appointment that has something so important riding on it such as if your child is or is not diagnosed with a disorder, that putting all your eggs in one basket that the universe will align and your child will be unaffected by variables such as hunger, sickness, tiredness, or general toddler tom-foolery and will be on their best behavior for an extended period of time to complete a variety of demands, is pretty unrealistic. Also, you want your assessment to be comprehensive. General developmental testing should be completed in addition to Autism-specific testing. Both of those things take hours. When’s the last time your toddler did everything you asked without hesitation for 4 hours straight? Do you think they’ed do that for someone they just met? At the end of the day, I’d go with whatever set up enabled your child to be seen over the course of multiple sessions, even if that meant sacrificing a multi-disciplinary model and only being able to see one specialist but being able to see them consistently over the course of several weeks. Children also need to be able to build rapport with someone new. When testing is completed over several sessions, you accomplish the following: 1st appointment: meet-and-greet for the child and case history intake. 2nd appointment: general developmental testing. 3rd appointment: Autism-specific testing. Sometimes, depending on the facility and insurance, you can even have a 4th appointment that the child doesn’t have to be present for to have a comprehensive one-on-one review of the results.
– Know exactly who’s doing your testing. Ask for their credentials. You have a right to do that.
– Now that you know the WHO, find out the WHAT. And I mean what assessment tool they’ll be using. It’s not as important for the general developmental testing but it matters very much for Autism specific testing. I recommend without hesitation that you absolutely take your child somewhere that the ADOS is given. The ADOS is the Autism Diagnostic Observation Scale. I’ve been to formal training sessions on the administration of this assessment and have my own copies of the scoring books- I RECOMMEND this test. Here’s why:
– There are different modules that take into account your child’s chronological age and verbal production abilities.
– It can be used for children as young as 12 months.
– It provides naturalistic opportunities for social interaction between your child and the examiner.
– Manipulatives that the test uses are engaging for children.
– It’s semi-structured…that means that some of the testing can be completed via an observation of behavior which allows our kids to simply be themselves versus having to be “on” the entire time.
– Parents can be present and their response to their child’s engagement is encouraged.
I also recommend the ADI-R (Autism Diagnostic Interview-Revised). It’s a very comprehensive, structured interview given to parents or caregivers (it can take up to 90 minutes- I’m not kidding about the comprehensive part). I have one of those as well and think it’s a valuable assessment tool.
– Lastly, I’d recommend asking if the specialist would review any progress reports from teachers, therapists, etc. as part of the intake.
Ok, whew! Stick with me. Now let’s get back to actually getting an appointment…………..
You picked a provider, you requested a script, you know they have your script, now you get a call from their office! BUT…..it’s probably to tell you there’s one more step you have to complete before they’ll schedule you. (Sorry, guys!) You’ll be given a packet of information to fill out and mail back in and it’s possible that your appointment won’t be scheduled until they receive all of it back. Here’s what to look for in that intake packet:
– general demographic information
– medical case history information
– developmental checklists (maybe a lot of them….and they may be the same regardless of a patient’s age so don’t worry if a lot of the content isn’t applicable for your child). They may ask if you’ll have someone other than yourself fill out the developmental checklists also- a teacher, therapist, grandparent, etc. If they don’t ask that, ask for another copy and tell them you’d like to send both in. It’s helpful for your diagnostician.
– a million and a half insurance and release forms….you know the drill
I ultimately sent in 25 pages of paperwork for each of my children. I honestly appreciated their due diligence.
Ok, now you’ve signed your life away, spent $10 on postage, and……you get a call to be scheduled! It could possibly go a couple different ways- you’ll either be in their office in the next couple weeks or your appointment could be scheduled three months out. The wait lists can backup at these places sometimes. If your appointment does end up being scheduled way out, ask to be put on a cancellation list so you can be notified if something opens up sooner. Also ask what you should bring to each appointment. For example, it was helpful for my kids to have snacks and motivating toys at the intake, but those things may have had a negative impact on standardized testing days.
So, we’ve established the following:
– what to look for in a provider
– how to get a referral
– what’s expected of you before the appointment
– what to expect at the actual appointment(s)
As always, please feel free to email me at ErinSamsell@takethatautism.org if you have any questions and I’ll do my best to help you out (or at least point you in the right direction)!