As a parent educator, and as a parent of autistic children with ADHD, I’ve had multiple discussions with parents who are wondering whether their child is autistic or has ADHD or “just” sensory issues or whether there are developmental delays. Parents who are wondering whether they should have their child tested. Parents who received testing results of “well, we can’t say it’s autism, but we also can’t rule out autism.”

I’ve also had conversations with colleagues about children in their classes, where they’ll wonder about a child’s unusual behavior, but also say things like “I see some symptoms, but I don’t think they’re autistic, because they don’t ______.”  [fill in the blank of a stereotyped assumption about how “all” autistic people behave].

It’s tricky to figure out what to do about these “maybe?” cases, and trickier still when parents see that their child has challenges, and think they would benefit from support (like occupational therapy or social groups) but their insurance won’t cover it unless they have a diagnosis.

The Spectrum / Gray Areas

When I was a kid, we tended to think of autistic people as ones who showed significant impairment in multiple domains: non-verbal, developmentally delayed, frequently stimming (e.g. rocking). Then there were a bunch of other kids who were skilled in many areas, but had some unusual behaviors. We called them “quirky.” I don’t remember anyone being called ADHD when I was a kid, but there were absolutely “hyper” kids, and “head in a cloud” kids.

We understand far more now, and have clear diagnostic criteria for ADHD, a better understanding of autism and sensory processing disorders, and solid research-based developmental milestones which help us more accurately diagnose delays.

But within these criteria, there’s still a spectrum…. a range of behaviors from subtle to blatant, and from minimal impact to major impacts on school and home. Some children present very obvious symptoms very early and get a quick referral for services. Many take longer to figure out.

When you look at any behavior scoring, there’s the “typical” kids. In this bell curve, the kids in the green zone of scoring are considered normal. The kids in the red zone are two standard deviations off of “normal” and typically qualify for things like IEP’s (or gifted services) or SSI disability payments. The kids in the yellow zone – one standard deviation off – would often benefit from some services / accommodations, but may not get diagnosed early or ever.

To Test or Not to Test

I have been a childbirth educator for over 20 years. In that field, we often say – before you get a test, think what you will do with the results and whether it will be helpful to you to have the results.

If you are a parent deciding whether to test, or an early childhood professional deciding whether to refer for testing, it’s worth asking that same question.

If there are services that you believe that a child would benefit from that they can only access if they have a diagnosis, then they should be tested. If you believe they are being labeled as lazy, or spoiled, or whatever judgmental label, and you are wondering if there may be an underlying cause, they could be tested. If it would be helpful to you as a parent to have a “label” that helps you better understand your child and learn more about what they need, then it’s worth getting them tested to learn more from a professional, whether that’s a diagnosis or just resources for more ideas and support.

I’ve talked to parents who worry that having a diagnosis will harm the child’s self-esteem, and wonder if it would be better to try to “pass” and get by without the diagnosis. I have talked to multiple adults who received diagnoses as adults (whether it’s a diagnosis of autism, of ADHD, of dyslexia, of auto-immune diseases…), and they pretty much all said that receiving a diagnosis was a relief. They’d always thought, or been told, that there was something wrong with them, and if they just “tried harder” or “quit whining” they would be successful. When they had a diagnosis, they were better able to understand their needs and felt more able to ask for the accommodations they need to be successful. And they’ve also discovered more about what their unique strengths are now that they’re not trying to be just like everybody else. They wonder how much further they could have gone in life if they had the diagnosis and the correct accommodations earlier in life.

There is a meme (I saw it posted on Twitter by “OMG I’m autistic AF” that says “why do you need a label? Because there is comfort in knowing you are a normal zebra, not a strange horse.” Once you know you’re a zebra, you can find a community of zebras and learn what helps them be the very best zebras they can be… so much better than feeling like a failure at being a horse!

To refer or not to refer

As a parent educator, I observe the kids in my class. I had one toddler where I had no doubt she was on the autism spectrum and would benefit from early and intensive services. I spoke to that parent early in the year, encouraged her to seek testing, and got her connected to services.

I’ve had lots of other students who were “quirky” or have asymmetrical development issues.

I do developmental screenings in my classes, and this can start the conversation with parents about developmental issues. If there’s a minor delay in one area at one time stamp, I just talk about ways to enhance learning in that area, but if I see more delays or persistent delays in that one area, we have a broader conversation about what might be going on there. Sometimes, I have shared “here are some things about your child that are a little different than what we see in other kids their age. It could just be a temperament thing or just where they are in their development, but it does make me wonder a bit, so it’s something you could keep an eye on, and check in with me again if it becomes a concern.”

If I suspect a specific condition, I use the word, because I’ve spoken to parents of 7 year olds who have said things like “I can’t believe no professional we worked with ever mentioned the word autism to us before last  month or told us that those behaviors might be signs of autism. If anyone had the courage to have that conversation with us, we wouldn’t feel blindsided now, and we could have learned more about accommodations that would have helped us parent him more successfully and access services earlier.”

Re-Framing A Diagnosis

I also talk about autism, ADHD, and SPD differently than the common dialogue. Autism is often treated as a tragic thing. ADHD is often viewed as bad behavior which would be fixed if the parents only ______. Kids with sensory processing issues are viewed as over sensitive and told they just need to get over it.

I think it’s better to just think about these as a developmental difference which creates some challenges but can also be accommodated. If a child is blind, or deaf, we don’t expect them to be able to change that, just by “choosing to behave better.” We don’t assume that “learning to act normal” will “cure” them. We try not to let their label limit them and try to maximize their access to a full life. We figure out what accommodations they need to move through the world, and to maximize their potential for a successful life. It’s an accessibility issue. The same is true for all accommodations.

And many of the “challenges” of these conditions actually come from societal attitudes or lack of understanding. If the neurotypical community understood more about neurodiverse people, it would greatly reduce the challenges of each condition. It turns out that some of the things we do to accommodate them also benefit all the other people in the room.

Screening

If you’re wondering about your child, or a child you know, start with a list of symptoms, or red flags to watch for. Or with a screening test. Here are some resources to try:

• Milestones Checklists from the CDC. (And here’s info about other developmental resources)
• Overall Developmental Screening: the Ages and Stages Questionnaire assesses fine and large motor skills, communication, problem-solving and social emotional development. Here’s how you can do your own ASQ screening and the ASQ-SE which focuses on social-emotional development.
• Autism screening: For children under 2, check out Baby Navigator. If your child is 16 – 30 months old, try the Modified Checklist for Autism in Toddlers, available at www.autismspeaks.org/screen-your-child
• For ADHD, consider the checklist of symptoms. Think about other children the same age as your child. Compared to them does your child have several of these challenges? Do they have these challenges only at home? Only outside the home? Only when doing things they don’t enjoy (like cleaning) or that don’t interest them (sitting still at a restaurant table)? If they have these challenges in all circumstances it is more likely to be ADHD. If you only occasionally see the symptoms, there may be another cause.

Diagnostic Testing

• If you’re still concerned after completing a screening, talk to your child’s health care provider, and/or contact your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. If your child is under three years old, look at the ECTA website. If your child is 3 years old or older, contact your local public school system.

I have a full post here on: Accessing Testing for Developmental Concerns.

What if they’re NOT diagnosed with a condition?

Sometimes you go through the steps of testing to be told your child is fine. Or that they’ll outgrow the challenges. Or they’re a quirky kid but only one standard deviation off, and thus don’t qualify for services.

If you feel strongly that your child needs services now and you can only access them if you have a diagnosis, you may have to do a fair amount of advocacy and may need to seek second opinions. Know that some clinics will refuse families who have already had an evaluation elsewhere – they worry that some parents may just be shopping around for someone who will give them the diagnosis they want. That wouldn’t be in the best interest of the child.

If it is possible for you to wait to pursue a diagnosis, that may work out better. A few months or a few years down the road, you may discover that they did outgrow it. They moved through a phase, and are now doing well in school and social occasions. Or, you may discover that things have gotten more challenging for them, and more professionals are on board with a diagnosis, given more evidence.

In the meantime, try not to be overly focused on finding a label – an answer to “WHY is my kid different than other kids.” Or on how to “fix” them.

Instead, you may find it more helpful to think: “given that my kid is who they are, what can I do to support them?” Learn more about how other people have accommodated kids with similar challenges, and try those those things. Figure out simple things that help them be more successful. Adjust some things so they’re not under continuous stress and pressure, while still giving them appropriate challenges so they learn and grow and reach their potential. Don’t let the possible label limit them more than necessary.

More resources

• To learn about autism, read my overview of autism which includes a lot more info on signs and symptoms, and also on supportive tools that help make it more manageable.
• For possible ADHD: If you’ve got one of those kids whose brain and body are always moving super fast, leaping from one thing to the next, make sure to check out my post on “the race car brain.”
• If you have a very “shy” kid who holds back, hovers on the edge, and observes, check out my post on the Slow to Warm Up Child.
• Read about Accessing Developmental Testing.

A sample decision-making process

I can share my own experiences about developmental testing for my youngest. I’m not saying it’s the ideal story or the only approach, just one example.

As a parent, I suspected something was unusual about him from when he was about six months old – signs like when he got overstimulated, he’d purposely bump his head into things. If the usual routines were disrupted, he’d have big meltdowns. When he was a toddler, he would perseverate – like during one gymnastics class where he told his coach “I am an ankylosaurus” at least 20 times. He had singular obsessions – like the month where he wanted nothing but Cat in the Hat, or the periods where he only wanted to talk about the planets and could easily be calmed out of a meltdown by just handing him 8 objects and asking him to decide which one was Mercury and putting them all in order.

However, he didn’t fit some key stereotypes of autism: he’s very verbal, OK at eye contact, and seeks out social connections. So no professional ever told us that we should seek an autism diagnosis, but I suspected that was where we’d be someday.

I learned  about autism and sensory processing disorders, and what accommodations help kids with those challenges, and I just did all those things for him. We chose preschools and activities that were a good fit for him, not ones that we knew would push his buttons. We didn’t have him tested yet, because having results wouldn’t have changed anything about what we were doing.

However, when he started kindergarten, things got more challenging. Luckily his kindergarten teacher was fabulous with him and just naturally did the accommodations he needed. But all of school didn’t accommodate as well. So, at that point, we had the testing done, and received an autism diagnosis, and that has made it easier for us to access the services he needs. For school, he has an IEP which ensures he gets extra support. And now our insurance will cover OT treatment and therapeutic social groups for him. Having access to therapies and supports are the upsides of having the official diagnosis. (There is a downside… some summer camps and other programs say they can’t take children with autism or can only take a limited number, so there are some programs that are no longer an option for him.)

In second and third grade, when kids are expected to sit still and pay attention for longer periods, he was having challenges with that, so we then learned more and had him evaluated for ADHD. That diagnosis allowed us to adjust his IEP for more accommodations which has helped him be more successful in school. And when he was 10, he was assessed to determine whether ADHD meds would be helpful for him, and they have, in fact, been very helpful. So, doing each of those evaluations when we did worked out for us. Your needs may be different.

We were hesitant to choose ADHD medication for my son, but again talked to adults we know with ADHD, and they universally recommended them, saying “on days without my meds, my brain just spins and spins and I can’t get the things done I need to get done and then I feel bad about myself and then I get less done… having my meds helps me be more the person I want to be.”

He will start middle school next year, and is far more focused and more organized than he used to be. We know that’s partially due to his meds, partially due to the extra supports he’s gotten from us and from school in learning organizational skills and executive function skills that might come naturally to others. He has far fewer emotional regulation issues and meltdowns than he had in the past. We know some of that is developmental, but most of it is due to the additional supports we have sought out (like pyramid model tools, Floor Time, ideas from Ross Greene and the Zones of Regulation) and the extra supports he has gotten from school due to his IEP.