“Should I get my child tested for autism?” This is a question I get a lot. I also hear a lot of reasons that parents give for not getting their children assessed for Autism Spectrum Disorder. In this article, I am addressing each of the reasons that parents give for not wanting to seek a diagnosis for their child and helping you decide if you should get your child tested for autism.
Table Of Contents
The Main Reasons That Parents Do Not Want To Get Their Child Tested for Autism
Denial
This may be hard to hear, especially if you are a parent being told by people in your child’s life that they need to be assessed for ASD, but denial is a natural stage of Austim Diagnosis Grief that most of us go through at some point.
The question is, are you in denial or is the person coming to you with concerns simply wrong? This can be tricky to establish.
If the source of the concerns is in any way credible (so an adult who works with children, is in the medical profession or whose life has been touched by autism in any way), even if you believe that they are wrong, getting tested may still be the best course of action. Keep reading and I’ll explain why.
Others Saying That There Is “Nothing Wrong”
This is a big one for lots of parents. So many of us, myself included, have had someone in our lives suggest that there is “nothing wrong” with the child that we have concerns about.
There are a few things to consider here regarding the person stating that there is “nothing wrong” and your child doesn’t need testing;
- They may not see all of the signs and symptoms that you do as they are not with your child around the clock the way in which you are. Often children with autism will self regulate well in public or when away for you, only to meltdown in the comfort and safety of their own home.
- They may not be an expert in autism and aware of all of the signs and symptoms of the spectrum.
- They may know a person with autism who is nothing like your child. They may therefore draw the conclusion that as the person that they know with ASD is different from your child and your child cannot possibly have autism.
- They may themselves be in denial about your child’s symptoms and not be willing to accept the fact that they may have ASD.
Worry That It Is “All In Your Head”
This one I have heard time and time again. I’ll admit, I was almost convinced that my concerns about both of my children on the spectrum at multiple points along our journey, were just in my head.
The truth is that if you have concerns, you need to get them checked. People who work to assess and diagnose children with autism on a day to day basis will be used to this phenomenon. They will not be annoyed with you for “wasting their time” nor will they laugh at you or belittle you for making things up that aren’t there. (Yes, these have all been concerns of mine at times, silly as that may sound now).
Check out the video below where I talk about our autism journey to hear more about how I worried the signs I saw were “in my head”.
Not Wanting “A Label”
When I was growing up, the whole “not wanting to label” children with anything was huge. There is definitely a move towards acceptance of neurodiversity now, with celebrating each other’s difference and offering the right support to the right children being encouraged. Still, not wanting to label children is an of so common reason that parents do not even look into getting their child assessed.
I’m going to tell you the harsh truth now
If your child has autism, they have autism. This is true whatever you call it. It is true whether you acknowledge or ignore it. It is true whether they are diagnosed or undiagnosed.
The only difference is that without this “label” they will not be able to be understood by their teachers, peers and carers. They will not be able to access the help that they need. They may end up with another unofficial label that undiagnosed children with ASD often get such as “the naughty one in the class”, “a bit quirky” “the anxious child” or “the disruptive one”.
Trust me, if your child needs the “label” of ASD, they are better off with it than without it.
Worry That They Will Find Something That Isn’t Really There
This is a debate and concern across various fields of medicine;
Will extra testing mean that they will find something that isn’t there? Is too much intervention bad? Are some things best left alone?
This is another concern that I had with my own children. Having been through the incredibly lengthy diagnosis process not once, but twice, I can safely say that I cannot see how this could ever happen.
The process is so incredibly detailed, that only highly trained professionals can administer the tests.
These doctors, educational psychologists and speech and language experts have to attend an additional 5-day course (in addition to their other professional training) in how to administer, assess and score the assessment.
It’s pretty intense.
It is my honest belief that there is no way in which a neurotypical child (neurotypical meaning a person who does not have autism, see my Autism Terminology Explained post for more details or see the video below) would ever be diagnosed with autism following an ADOS.
Concern That The Testing Will Be Stressful For The Child
While I cannot guarantee that your child, whether they are neurotypical or have autism, will be 100% happy throughout the whole process, I can attempt to reassure you by sharing my own experiences.
My children did not find any part of the testing process difficult, stressful or upsetting. No part of it was invasive or unpleasant. If I’m honest, they didn’t really know that they were being assessed. We went along to see some very nice people (all of the staff involved in the ADOS really were wonderful) and they played some games and did some activities. That’s it.
If you want to hear a full account of exactly what went on in my daughter’s ADOS assessment, check out the video below.
Concerns That The Diagnosis Process Will Be Stressful For The Parents
Now I definitely cannot promise that it won’t be stressful for you as a parent. In fact, in all honesty, it probably will be a little stressful. Full disclosure, I had no idea how stressful I found my son’s whole process until I realised that the rash that had developed all over my face at the time, was, in fact, a stress rash.
Still, this is not a reason not to get your child assessed. You know why? Because the only thing more stressful than being the parent of a child who is going through an autism assessment, is being the parent of a child with autism who is undiagnosed, is struggling and receiving no help or support.
Difficulty In Getting Referred
People citing that it’s too difficult to get their child referred and assessed as a reason not to begin the process, are suffering from “overwhelm”.
I get it.
The whole thing is overwhelming.
All I can say is, long and daunting as the process may be, the sooner you get started, the sooner you’ll get somewhere.
If you are feeling “the overwhelm”, make the call, send the letter, sign the form. Do whatever it is that you have to do to take that first step. Maybe, if this is how you are feeling, you will take comfort in the fact that you’ll probably be waiting a while before the next stage anyway. Still, get it started. The sooner you start, the sooner you’ll get anywhere.
The Cost Of Testing
Now, this is one that I can only comment on based on my experiences here in the UK. I was lucky enough to have both of my children diagnosed via the NHS, so there was no cost involved. If you also live here in the UK, cost should not be a barrier to assessment.
If you live elsewhere in the world where you will have to pay for your child to be assessed, then obviously it may be a different story. I don’t know your financial position or what your insurance may cover, but you should know. If you don’t know what the costs are, what your financial situation is or what your insurance offers, find out.
I would say that it is important to weigh up the cost of paying for the tests, versus the potential costs of dealing with a child who has not received the correct support and understanding that they need. I have heard countless stories of those diagnosed with autism later in life and the impact that it had on their mental health to grow up feeling “different” and “misunderstood”.
So should you get your child tested for autism?
If you are reading this article, then it’s probably because you have your concerns about your own child. If you have that niggling feeling that there is something that needs investigating, then from one parent to another, the answer is an absolute yes.
Yes, you should get your child tested for autism. Worst case scenario, it all comes to nothing and your child comes out the other end with no diagnosis and the “label” of “neurotypical”. At least you got it checked. In my experience, as parents, it’s the things that we do not do that we regret, rather than the things that we do.
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