The Top 10 Things I Wish We’d Known When We First Got Our Autism Diagnosis

autismHave you ever driven down the highway on your way to a destination and accidentally took the wrong exit? So you flip around to get back on the highway, but you can’t find the right road? Our journey on this path of autism and ADHD with a side of dysgraphia has been something like that. One minute, everything is (mostly) normal and the next, you have no idea where to go or who you need to talk to… you just know you really just want to be back on the highway driving down the happy little road you used to be on.

Well friend, I don’t know your exact situation, but I DO know how tough it is to not know what to do next. I know when it comes to school, we spent months and even YEARS chasing dead ends and listening to well-meaning but under-trained educators who didn’t know what certain learning disabilities look like.

You already know how I feel from a faith standpoint. My little dude was given to me because God entrusts him to me. This journey is exhausting. But if I can do anything, I want to share what I wish I knew, so maybe your journey isn’t quite so rough. Are you ready? It’s long – 2200 or so words, but took me YEARS to learn. Lucky you, to read it in a few minutes – lol! Deep breaths, friend. We’ve got this.

Here you have it. The top 10 things I wish I knew before we started our journey:


1. Take a deep breath. Go have some quiet time. You can’t drink the ocean with a paper cup, and you’re going to want to Google everything at once. Do it, but give yourself time to absorb as well. You’re going to need to advocate for your child, which means you need to be mentally sharp.

2. God gave you intuition. Use it. Don’t brush off anything that you know in your heart is “off.” Here’s an example. When Nathan was in the 1st grade and I questioned why his letters were still backwards, I was told that was normal for his age. And it is! But it’s not normal in the 2nd grade. Or the 3rd grade. Or the 4th grade. By the 4th grade, if your child still signs Father’s Day cards to “Dabby” it’s okay to question that. Need another example? In 4th grade when you do question it and the teacher tells you, “I don’t see dyslexia in him” ask for help. Take him yourself for testing, ask a teacher friend from church, or ask on an online forum. Don’t take one person’s opinion as the absolute truth. When we took my son to be tested for Dyslexia because we knew there was something wrong, the test came back as negative for Dyslexia, but we walked away with a diagnosis for Dysgraphia. Had I listened to the teacher that said, “He’s just not trying hard enough,” I’d have a child stuck in the discipline system instead of a child with learning disabilities and that is a HUGE difference.

It’s okay to ask, “Is there anything else?” After our diagnostic testing for Dysgraphia and ADHD, I asked the hard question, “What else?” We took him for additional testing to see if or where he fell on the autism spectrum. You may not like the answer but it will help you get the best help for him or her in the long run if you know the giants you’re facing.

In the grand scheme, we cannot allow an educator, whose job is to educate, to diagnose our children with medical conditions. Whether they see it or not. They mean well, but they are not medical doctors. For three years, I let someone else tell me what was normal for my kid. And years before that, I let them tell me he’d outgrow it. Don’t let yourself make that same mistake.

3. Once you have a diagnosis (or even before, so you know where to go), get help. Find an ARC near you at Founded in 1953, the ARC is an advocacy center for children with intellectual and developmental disabilities. They can help you find resources and an advocate if you need one. Insurance should not ever be an issue. IDEA and FAPE were put in place BECAUSE poorer families could not afford elite private education, and every child regardless of social standing deserves the same appropriate educational services.

4. Special Services Cost Money. The school only has so much to go around so they will question anything and everything. Personally, I took our battle to a school board meeting. I had written out statistics, facts, and figures, and during the “public” time, I stood up to ask why my child was not getting the help he needed when they said he is “fine” but he failed math ALL YEAR LONG. Fine does not equal flunking. They asked me to stay afterwards in a special meeting. I did. THAT was the key to moving from a 504 plan to an IEP for us. I came respectfully, called out the teacher BY NAME who told my child he didn’t look like he had autism, and yes, the board handled it. I’ll say it again, friend. God gave your child you. No one cares for him or her as much as you do. Be their advocate.

5. If YOU are serious, they’ll take you seriously. Get a binder. Start keeping copies of everything in it. Copies of meeting requests, state laws, conversations and dates, etc. I have a printable on ETSY that I created just for this purpose to go in my binder.

  • Call an official meeting with the school. Include you, your spouse or a trusted friend, invite the principal, and request the school counselor OR district special education resource if possible.
  • Have IN HAND any diagnoses you already have from your pediatrician, including any diagnoses of autism, ADHD, Sensory Processing, etc.
  • At this meeting, you are going to formally say that you are referring your child for special services. IDEA, which is the Individuals with Disabilities Education Act gives you this right. A referral can come from parents, social services, public health, day care workers, or your doctor. Document who came to the meeting, and the date and time. Take notes. You can request a referral on the basis that his or her academic performance is behind that of his/her classmates based on his/her (dis)abilities.
  • (IMPORTANT) Assessments – they have to determine if he/she is eligible. They’re going to tell you they’ll start with a 504 plan and see if that works. A 504 plan is the starting block. It’s the jog before the marathon. You have to try it by state law because it’s the next step, and in some cases, for some kids, it’s all you need. For others, like my son, it’s not enough. As that is starting, if they will not suggest it, you can immediately request an evaluation. For Nathan, this meant an evaluation by the onsite (SCHOOL) psychometrist. I fought back and said no, we need more. The 504 plan is like the store-brand frosted flakes. Not as good, not as tasty, not the real deal (sorry, Kroger.) A 504 plan does NOT have to be honored when you move schools where an IEP does.
  • A 504 plan is reviewed annually while an IEP meeting can be called and the IEP revised at any time.
  • An IEP cannot be started before a 504 Plan. In other words, you have to try the store brand before you get the good stuff. While you are trying the 504 plan, you can request the testing evaluation that, if he or she qualifies, would earn an IEP.
  • IEP – In our case, I pushed for testing for Nathan. The school paid for an independent psychologist evaluation for autism for him. Had I accepted their diagnosis from the school psychometrist, he would not have an IEP today. You must request an evaluation for the process to start. Note: A Psychometrist is not a Psychologist. Psychometrists can only interpret test results, but they cannot make the actual diagnosis in school. If the school uses an in-school test resource, such as a psychometrist instead of pychologist, they can sway the results based on their own input, but they cannot say that a child walking down the hall looks like they have autism, because they are only trained to look for and compare data.
  • They have 60 days to do an evaluation after you formally request it. Send it in an email so you have the date. If you disagree with the results of the evaluation, you can take him or her for your own independent evaluation and request that the school pay for it. You do NOT have to agree with the school’s diagnosis because it could be biased.
  • If he or she is determined to be ineligible, you can also request a hearing to challenge the decision. By law you can revise an IEP whenever you need to. You can ask for whatever you need to and they HAVE to provide it. Once they determine he or she is eligible for services, which they did, they cannot legally revoke those services. The IEP has to be developed by the parents and the administration.
  • Implementation. The IEP “lays out what constitutes an appropriate education for the student, the extent to which the student participates in the general education curriculum, the accommodations the student receives both for instruction and for testing, and the array of multidisciplinary services from related service providers that support the student’s educational program. For students who are participating in a different curriculum or whose goals differ from those of the general education curriculum, the IEP has specified alternate assessment procedures as well.” If you feel the school is not complying with her IEP, you can bring this up to school officials.
  • The laws under IDEA require that there is accountability for every IEP, from the school. The accountability measures what the student is expected to accomplish and how they performed against that expectation.

6. Got teacher friends? Ask them what type of accommodations they see in their own classroom. When I gave two very good friends some insight on what we were facing, they gave me some GREAT accommodations that I wouldn’t have thought of, but made so much sense after the fact. They will share with you if they’re a good teacher because they really do want your child to succeed. Don’t ask your own teachers. Ask impartial teachers.

7. The line to be tested is usually long. Keep them on the list, but if you have the resources, go outside to have them tested on your own. It may take them an entire year to get your child tested, and you’d have lost all of that time you could have had assistance from an IEP or 504 plan. In the meantime, have your pediatrician or a testing facility test your child, and let them know what specific type of tests you’d like and for what purpose. For your child to get help, the doctor’s report can’t just say, “Susie has autism.” It needs to say, “Susie has this which will affect her in class in such and such ways.” Then when your school sets up accommodations, they’ll do so based on how your child is affected in the classroom. If your own doctor does the testing and provides a thoroughreport of how that diagnosis will affect her in school, you should not need the school to retest.

8. Schools care about scores, not behavior. Of course, they don’t want your child’s behavior to be a distraction. But hear me out. Your doctor can test for Autism or even Sensory Processing Disorder which CONTRIBUTE to learning disabilities or dysgraphia/dyslexia/dyscalulia which ARE learning disabilities. Schools test only for a numerical difference between your child’s scores and the other kids’ scores. If they find those, then they’ll give him or her accommodations to aid with that but they don’t make diagnoses like dyslexia, autism, etc unless you fight for those specific tests to be done.

9. When the school orders the test and pays for the test, stipulate that the test results are to be sent to you directly from the tester. When they tested my son, they also interviewed my husband and I for any historical clues, and current behaviors. But when they refused to release the results to us, and instead released them to the school, I felt violated. You took hours of my time to grill the fire out of me, but can’t give me the results, because I’m not the “client?” Get it in writing that you want the results made available to you for pick up when the test results are complete.

10. Consider the future when requesting accommodations. I felt so guilt when I first asked for accommodations, because I felt like we were being “needy.” I had some teacher friends remind me that it wasn’t being needy, because it’s what my child requires to succeed. For example, one element of dysgraphia is poor spelling. We asked that spelling not be counted off in normal assignments, unless it was a spelling test specifically. State testing is just once a year, but we asked for extra time for standardized tests so he’d have more time to read and do calculations. Should he need it, then he has it. Each grade level is different and just because he needs it now doesn’t mean he won’t need it later, and vice versa. Consider not just what you’ll need right now, but think about what the whole school year looks like.

So there you have it – the past five years of lessons learned, rolled into one post. (Okay, maybe not ALL the lessons learned. But the top 10, at least.)

I know it’s a lot. You may need to come back after it soaks in. I do know one thing. You’re not alone in your journey. I walk with you, and God will walk with us both.

I’m cheering for you,


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