Diagnosis Day








Fist things first: WHY is diagnosis important??


If you are seeing red flags or concerning behavior in your child, is it absolutely essential that you pursue a formal evaluation?


...Well, no.


But, the benefits of obtaining a diagnosis of Autism can include access to services/treatment/an IEP, access to specific funding or disability resources or support, possible reduction of parental/familial stress or anxiety about the child's behaviors or differences, and an increased understanding of your child's unique needs and motivations. Basically, the sooner you know what is causing the red flags you are observing, the sooner you can DO something about it.




Many Autistic adults report having gone through life feeling different, odd, or struggling socially, and express wishing they had known much earlier in life that they weren't "wrong", while everyone else was "right". It can be extremely helpful for a person to know how their brain works (and why), so even if as a parent you aren't concerned if your child could be Autistic, your child may want to know one day.





TIPS

· Ask questions about alllllll the things! Make a list before you even arrive, just to make sure you get all your concerns out when you are face to face with the clinician. This is the time to express your concerns and get answers

· Don’t over or under report. What I mean is, describe what typically happens as truthfully as possible. It will be very clear to the clinician if you are glossing over serious concerns, or if you are minimizing strengths

· Make sure your child (and you!) are in a good place for the appointment: fed, rested, calm, etc. While many parents bring along a tablet to keep their child entertained on the way to the appointment, keep in mind that tablet will have to be removed at some point. It may be a good idea to bring a less powerful reinforcer so you don’t push your child into a full tantrum right as the appointment starts

· Avoid jumping in to help/guide your child, or directing your child to attend to the assessor (e.g. “C’mon Ally, push the red car!”). I know, it’s hard to just sit and watch your child perform poorly. But that is exactly what the assessor needs to see. Don’t worry, there will be parts where the assessor needs your input.

· Don’t expect this whole process to be wrapped up in one 2-hour appointment. Proper assessment takes time, you may encounter waiting lists, and most likely there will be more than one office visit required.



WHAT TO EXPECT

Regardless of the diagnostic tool used, there are certain commonalities you can expect. To name a few:

· The “majority example”. If your child exhibits a certain behavior 5% of the time, and a different behavior the other 95% of the time, the assessor will focus on what they do 95% of the time.

· Difficulty leaving/separating from the caregiver, even if that person is in the same room. This is very common, don’t feel embarrassed if your child clings to you and refuses to interact with anyone else.

· “Who is this child?”. By this I mean it is very common for the child to behave differently during assessment than what the parent is used to seeing. If the child babbles at home, they may be silent during the appointment. If the child bites and pinches at home, they may be sweet as pie during the appointment. It is also important to understand that the assessor must make decisions based on what they are seeing. This is why the evaluator will likely have you complete multiple checklists or forms, so they can compare what you typically see against the snapshot of the child they are seeing.

· Super, super short attending to tasks (e.g. child stays seated for .5 seconds). VERY common. Don’t become fearful that the assessment will be ruined, or full of errors, because your child just flits from one task to another or will not participate in any tasks. This is actually part of what the assessor needs to see, and it provides valuable information about functioning.

· Don’t expect to get to the end of the appointment and hear the assessor say “Welp, he’s Autistic”. Allllll of the data, scores, and observations must be compiled and analyzed, and this process takes time. While it is very okay to ask the evaluator their initial impressions, please give the evaluator time to properly review all of the data before confirming any diagnosis.



NEXT STEPS

· After the diagnostic appointment, it will likely be a few weeks (or longer) until a follow-up appointment. The follow-up appointment is where the evaluator reviews the results with you and will go in depth to discuss recommendations.

· The formal diagnostic report will be long, detailed, and jargony. Kind of like reading a technical manual upside down. Be prepared to ask questions, and then ask more questions, until you actually understand the clinician’s report.

· If your child is not diagnosed, sometimes this can mean additional diagnostic tools are recommended, the child may currently be on the cusp and another evaluation is recommended for the following year, or there may be other explanations for the red flags besides Autism.

· If your child is diagnosed, this just means that in most cases they now become eligible for a myriad of services. It does NOT mean anyone can predict their future, tell you they will never (fill in the blank), or tell you that (fill in the blank) will always be a struggle.

· Please be prepared for more delays. In a perfect world, families would move seamlessly from diagnosis to treatment. Unfortunately, in our actual world, there are far more people needing services than providers offering services. There may be a wait to access various therapies, get into your school districts Autism program, apply for SSI, etc.





*Recommended Reading: After the Diagnosis



*Here is a parent perspective of the diagnosis appointment

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