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General Information about the Diagnosis Process
Before you get a confirmed diagnosis of autism, your doctor or your neurologist or a combination of other medical professionals, will most likely recommend a series of different tests and assessments to rule out other possibilities of what might be going on.
A complete, thorough and specific diagnosis of what your child has is exactly what you will need to receive easier access to services that your child requires.
This will take time and it might even take several visits.
Make sure that you note how the professionals that you interact with are treating you, such as if they are being helpful, understanding and supportive - or not. Do this for EVERY professional that you deal with directly in regards to your child. You will want to have helpful and supportive professional people on your side throughout this entire process. Nothing makes this process more difficult or frustrating when you have people involved who dismiss you or are just straight up useless! Feel NO GUILT if you require to replace them with another doctor or another professional who will be a team player with you on this journey.
The best assessments are conducted by an entire team of professionals, including but not limited to; your family doctor, pediatrician, neurologist, occupational therapist, speech & language pathologist, psychologist, etc... You can ask who will be conducting the assessment and who will be involved directly with the interacting of your child. For any one medical professional listed above who is the primary person conducting the assessment, your child should actually be seen by them directly at some point during the process and not only just by their students or other staff who are “learning” to be in that particular profession.
You can ask if standardized testing will be done or which other tests will be offered, for example, they might suggest a hearing test or do measurements of your child’s head, etc… However, regardless of how mild or severe your child’s autism is; almost all treatments are the same. While it would be nice if these treatments were specifically tailored to the child, many therapies and assessments are applied to “all” within the spectrum.
Ask if there are any upfront costs that you need to be aware of before these tests or assessment take place.
Before the assessment even takes place, ask them how long the assessment process itself approximately takes to complete and what it will consist of specifically. Let them know that you would like a list of resources for your child. Ask them how long you will have to wait before you find out the results of the assessment. Ask if you will be provided with a printed copy of the report for the assessments that your child will do and if they don’t provide it that day (which sometimes they don’t) when will it be mailed to you or available for pick up. Do this for every assessment that you do, ALWAYS. Each assessment your child completes is very important because it is a tool that can be used to your child’s advantage in many ways. It should include information about your child’s abilities and give a good accurate description of what needs to be worked on accompanied with other recommendations. This will help give you some focusing points in planning for your child’s educational or behavioural program. Keep them in a file, even if you disagree with what is recorded within the report. Sometimes you will have a hard time getting a copy but be persistent and ask again. And again if needed.
In some cases, you can use these assessment reports for access to funding or other services. In terms of funding support and services, it is always better if your child is over-diagnosed, rather than under-diagnosed.
You can expect the assessments to make for a long, tiring and stressful day for both you and your child. Depending on where it is, you might also find that just getting to the place is a challenge in itself and sometimes you or your child will feel like “your done!” before even setting foot in the building or they even begin! You will be asked a bunch of questions and probably be required to fill out some forms such as general information and multiple-choice question forms.
If your child is in a challenging mood before the assessment begins, don’t worry. A great majority of these tests are generally designed so that regardless if they are not in the best of spirits, it should not affect the outcome. You can let them know ahead of time before they begin, but don’t be alarmed if they attempt to continue on doing the test.
When the assessment is completed, wrap up any paperwork that you need to finish before leaving, get yourselves out of the building, head home (or out) and do something fun! Assessments are a big deal. Your child will probably feel like they have had a full hard day’s work - and they have! And quite frankly, you will probably feel that way too - because sometimes these things are hard to deal with and do! Be sure that after you are finished (either that day or the next), that you do something that is enjoyable for both of you! I make sure that even now, after all this time, that ANYTIME we both have to deal with a challenging appointment, it is a MANDATORY PRIORITY that we do something fun afterward! No exceptions!
Again, please keep in mind...
This is just some general information on how it might be for some families. It is obvious that feeling overwhelmed and (any other feelings you have that pop-up - put in here...) by reading all of this pretty much goes without saying. There are many other steps to take after the first initial part of this process. The waiting game of receiving or not receiving a diagnosis can be very difficult and stressful, to say the least. This stage of it alone is a great deal to handle all at once, especially if you are a single parent. It is important to remember that during the beginning, I found to be the most stressful because everything seemed very rushed with all of the back-to-back appointments, meetings, assessments, etc... and it felt like it was never going to end, but it does. It isn’t hard to worry and get easily caught up about getting a diagnosis and dealing with doctor appointments, neurologist visits, evaluations, therapy appointments, and meetings.
In the mean time while in the chaotic rush, do not lose sight of the most important person in all of this – your child!
They are their own unique person and it is important for you to simply enjoy each other, spend time together and comfort each other while all of this is going on. Things WILL slow down once the first parts are over and then you can tackle other things that you need to do, regardless if your child gets a diagnosis of autism - or not. However this turns out for your child and yourself, remember that information about autism is much more widely today and there are many support networks that are either local to you or online that are out there to help you.