Seek a formal diagnosis or not?

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Hello,

I have a wonderful six year old daughter. She has confirmed SPD and, after encountering some challenges in Kindergarten, we visited with a neurologist who said my daughter also showed signs of ADHD and Asperger's. I've been uncertain on whether to seek a formal diagnosis or not. She started 1st grade this fall and things are much better at school. She is very loving and we get along really well at home, but we have been dealing a lot with disobedience and her trying to get away with stuff all the time. I put in my mind that since she shows signs of being in the spectrum, that I should read and educate myself on how to better parent her. Still, I am struggling and ask myself if I should seek a formal diagnosis.

I haven't done so far because I am not sure what exactly would change and why it would be better to have a diagnosis. My main goal a few months ago was to have an IEP, but school is going well now, so I wonder if an IEP would only complicate things. I need to add that no one believes in any of the diagnosis. The school dismissed any of my arguments that she was struggling. To them she makes bad choices and wants attention. I understand that it how it looks. She is extremely outgoing and attention/sensory seeker, and it is hard for me also to tell if she is misbehaving.

I'd appreciate if you could share your thoughts and experience in what changed after having a diagnosis at this age.

Thank you!

My input, for what it is worth, is that given that your daughter has had behavioral issues in the past, and especially because the school is unsympathetic, I think I would pursue a diagnosis, for those reasons alone. If you have a diagnosis (and a behavioral plan) there are certain protections she will have in terms of how they have to deal with behavioral issues stemming from disability. You may need that in the future even if you do not need it now.

We had a behavioral plan in place as part of his IEP, even before my son needed one, at the insistence of the psychologist in the diagnostic team, for that reason, b/c she said this would protect him procedurally if it was ever needed (which it was). It is common for behavioral issues to occur, or reoccur because the gap between what your child is expected to do, and what she is able to do, can increase as time goes on.

Thank you, ASDMommyASDKid! Your input is much appreciated. I've never thought from that perspective, that one day she may need for some reason and then it will all be in place. I am going to face some resistance from husband and school, not looking forward to that. Sometimes it seems people think I want her to have a dx. All I want is to have answers because answers come with better tools for me and for her.

So, if she has a dx, will it move forward with her during her school life? Does it get communicated to the other kids? Thanks again!

IEPs and diagnosis are strictly confidential. It would violate several laws if they told the other kids! That totally should never happen.

As for diagnosis, it's really important to remember that most autistic kids who are more accademically able don't bottom out until 2nd or 3rd grade because the material changes at that point. In general, a dx will be considered up to date for three years, after that, the school will request a new one.

I can't really answer whether its right for your family.

Mommy2c

Greetings. I would like to offer another angle of thought to the conversation. Similar to you, I have a 6yr old child in first grade. Prior to his ASD dx he was dx'd with SPD as well.

Sometimes people are worried about the label.... and I get that. But one thing that is great about the evaluation process is that it really identifies everything that is present and at what degrees. A personal example: Without a formal evaluation on my son we would have never known that his processing speeds are below average. Nor would we have known that he is gifted to the extent that he is. We also learned that his perception of reality is a bit different than other peoples. Because we know these things we can make the most educated decisions moving forward and understand how him being represented in two different parts of the spectrum will present challenges for him in the future.

Behavior problems in the class room are usually attributed to underlying causes. Sometimes it's bordom. Sometimes it is sensory driven and sometimes it can be age appropriate as well. An evaluation might help define some of the whys and with that you can then focus your efforts using the right methods to correct them from the start minimizing the trial and error effect.

Unfortunately, most schools wont raise the red flag unless your child is struggling academically. For the Aspie child though the struggles may be in other areas that even though it may not seem like they are detracting from academic success, they are. And for that reason a 504 or an IEP will come in handy. It may be the only way to aquire needed accomodations, sensory OT, social skills classes, etc through the school system. So from that angle a diagnosis would be needed.

Regardless of what label is given to anyone, if there are characteristics present that are creating challenges and deficits for the individual those will continue. Those are the things as parents we hope to minimize. It is well know within the ASD community that early intervention promotes the best chances for long term success. I hope this has been value-added.

I hope that you find the answers you seek. Kind Regards. Shark

Thank you both for your kind words and suggestions. Sorry it took me some time to respond. I really appreciate you sharing your stories and knowledge with me. I can see the benefits of having a formal answer, and therefore a formal plan to help her. I am struggling to convince my husband, so it may be that he will be only open to it if/when she gets in trouble at school again, and that breaks my heart. I will keep trying.

Thank you again so much for your input!

ALWAYS seek a diagnosis... I wrote about this HERE

I agree - there are advantages to seeking a formal dx. I have a son with ASD and I also am a speech pathologist who works in a school system with kids on the spectrum, as well as multipli-disabled kids not on the spectrum..and I will tell you that kids with autism get more services. My students are eligible for more speech therapy, and something we call Social Skills. If they don't need those services, great, but other students in the Multipli-disabled classes do not get as much speech, nor do they get social skills. This is because ASD's hallmark symptoms are communication impairment and social difficulties. Having a dx can effectively put a safety net in place so that if and when she needs those services, she can get them.

I would seek an evaluation for sure. Like someone else said, if you find yourself with an issue at school, it's nice to have all of that stuff in place. From the point you initiate a meeting to have your child assessed to the point you have an IEP in place would take months in my experience. Once you've had the evaluation at school, assuming that you have eligibility and an IEP is in place, things can be tweaked along the way as her behavior improves or gets worse.

I have two kids on the spectrum. One is 7 and one is 10. Having the evaluations done just helped me a ton with knowing how to help them with their homework... know what to read up on... etc etc.

If you are looking for a book to help think it through, I recommend this one: https://www.amazon.com/Quirky-Kids-Unde ... 0345451430

Also, something else to consider: When you get an evaluation at school, they can say things like, "Likely ASD" but not give an actual diagnosis. It doesn't really matter because often the assessments are the same as what you'd get privately. I've chosen to stay with just the school assessments at this point because Insurance in our state is only required to cover ASD therapies up til the age of 7. So, when we see therapists and specialists, they can code it however they need to so we can keep coverage for things... Just something to think about..

Good luck!!