I am the first to admit that I hate labels. As an adolescent I wanted so much to fit in and be like everybody else. In my early 20s, I took the Meyers Briggs personality test and found out I was an INFJ – rarest personality type. Only 2% of the population falls into this group. Suddenly I understood that my uniqueness was not to be hidden in a wash of average. I was different. And because I was different, I was meant to stand out.
In the world of special education we love our labels. They give a context for what may be going on with a child, and this gives us a framework to help make some progress. The problem with labels is that they come with stereotypes, and because of that, everybody these days seems to be an armchair diagnostician.
But poor social skills means autism spectrum, right?
In today’s world, when somebody sees an individual struggling socially, there is an assumption the person is on the autism spectrum. Bad social skills = autism. That is the generally accepted belief, especially among some educators who work with kids in special education.
I’m tired of this stereotyping and I’m here to tell you it’s not true. Autism is a diagnosis in the DSM-V (Diagnostic Statistical Manual V). To qualify for this diagnosis a person must exhibit significant issues with social interactions PLUS issues with repetitive or perseverative behaviors (i.e. stimming, OCD, narrow interests).
While social skills is a big part of an autism diagnosis, there is another diagnosis in the DSM-V called Social Pragmatic Language Disorder. The creators of the DSM-V knew that many people did qualify for an autism diagnosis because they lacked the repetitive behaviors, so they created this new diagnosis to help distinguish the two. Again, more labels, but in this case, as a way to define a difference between groups.
Anxiety is a huge reason for social difficulties.
My older son sometimes has awkward social skills. When he is with family or people he knows well, he is totally fine. You wouldn’t even notice he struggles. But when he is with strangers, or people he is uncomfortable with, he gets anxious. His social nuances fly out the window, and unfortunately his social skills regress. He is working on it, and he has made tremendous progress, but other people don’t see it that way.
I used to be the same way. In my 20s I actually developed social phobia because I was so keenly aware of my social inadequacies. I dreaded the thought of going to an event without somebody to accompany me. I literally would perspire uncontrollably when going to corporate parties for my job. I finally forced myself to go to singles events alone. Using my own brand of cognitive behavioral therapy, I overcame the worst of my social phobia. But even today, 20 years later, when faced with a lone venture into a group of strangers, I have to talk myself into staying calm and focused.
What causes social skills difficulties?
There are so many diagnosis that can cause social skills deficits. My son has 3 of them:
- auditory processing disorder
- post-concussive syndrome
- cerebral folate deficiency
He basically missed out on social input because he was essentially deaf for over 5 years due to a conductive hearing loss. Then he ended up with auditory processing disorder, which scrambled his brains ability to interpret what people say. Finally he got post-concussive syndrome, which created an overactive brain that went so fast he could not assimilate the information he could comprehend. Finally, he had cerebral folate deficiency, which made it difficult for his brain to process at normal speed, so he could not keep up with social conversations or activities, and he was left out because of it.
Now he struggles with social anxiety because he is aware of his social differences. He know he does not exactly fit in. For the most part he is okay with it, until he really wants to fit in with a specific group, and then he worries about it.
It irks me when another mom, teacher or professional tells me that he has autism. He does not have, nor did he ever have, the repetitive behavior for autism. He has been assessed 6 times for autism, and it always comes back he doesn’t have it. His last ATEC score was 4. I have reviewed the DSM-V diagnostic criteria over and over, and it never fits for him.
So I would like to ask all of you a favor.
PLEASE stop saying a kid has autism just because that kid is socially awkward.
There are so many people who suffer from social issues, and they are not all autistic. PLEASE remember that diagnosis should be left up to professionals. Even if you are a professional, unless you assess the child, you do not know the whole history of that child, so don’t label until you get all the facts.
If my kid had autism our life would have been so much easier. We would have gotten all the services he needed, and we would continue to get services from Regional Center. We would have gotten SSI checks to help us pay for the extra expenses that come from having a special needs child. We would have had an easier time getting services in school. Believe you me, I’m not resisting this label because I am ashamed of it. I’m resisting it because it’s the WRONG label for my son.
And just a follow up, my son is now recovered from auditory processing disorder, post-concussive syndrome and cerebral folate deficiency. In chapter 19 of my book, Special Ed Mom Survival Guide, I talk about the 4 stages of recovery from developmental delay. For social skills he is in stage 4, acquiring knowledge.
He continues to improve in his social interactions as he learns to manage the anxiety that triggers the challenges. I am confident that one day he will have typical social skills. In the meantime, he continues to flourish and grow and learn, just like any typical teenager.