“What exactly is autism? How did you know he had autism?”


Short answer:  Autism is a disorder characterized by social deficits, communication deficits, and repetitive behavior. It is a spectrum disorder so these symptoms can present themselves in many different ways, from the mild to the quite severe. I always knew my son was different. And when he didn’t talk by age 2 I knew his development wasn’t on track.

Long answer:  As he got closer to age 2 the things that made him “different” started to become more noticeable and I started to worry. I had a lot of experience with kids. I worked as a nanny and in preschools before having children of my own so I knew that his development wasn’t on track. Plus his sister is two years older than him so I had her to compare him to. But those around me assured me he was fine and quieted my worries.

Some early things I noticed and brought up to the pediatrician were: He didn’t respond to his name, he didn’t seem to pay attention to me or have any sort of attachment to me, he had weird “rituals” (like rolling french fries on his cheeks before he ate them, and dancing in circles around his toys), and he didn’t follow any commands – he seemed deaf but I knew he could hear.

But every time I voiced my concerns to his pediatrician she assured me he was fine, a “walker not a talker”, etc. This is a common story, I have met many people who had the same experience with their pediatrician. Autism is hard to diagnose before age 2 since diagnosis is based on observation of behavior, and some of the behaviors (like speech) don’t really develop until that age anyway.

Looking back there were lots of signs that he had autism, but I overlooked them. One obvious way I could have known is that he never pointed. He didn’t make his needs known with gestures. Babies are supposed to point when they want something, it is one of the first ways they learn to communicate.

I always thought autism had something to do with lack of eye contact. My son always made plenty of eye contact, so of course I figured that meant he didn’t have autism.

Autism is a spectrum disorder. That means that individuals with autism demonstrate similar traits that fall under the diagnosis of  “autism spectrum disorder” but they are also very different. Since it is a spectrum those with autism can be really high functioning and you may not even notice that they are different, and others are low functioning and may have very limited or no verbal skills and may seem very absorbed in their own world. And others are somewhere in between high functioning and low functioning. That is where my son is on the spectrum – somewhere in the middle.

So I am trying to make this short and sweet and to the point the best I can.  But it is hard to sum autism up in a short blog that people actually want to read. So here is an excerpt from the Diagnostic and Statistical Manual of Mental Disorders – it’s not short but it’s thorough 🙂 :

Diagnostic Criteria for Autism Spectrum Disorder

A.      Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history (examples are illustrative, not exhaustive, see text):

1.       Deficits in social-emotional reciprocity, ranging, for example, from abnormal social approach and failure of normal back-and-forth conversation; to reduced sharing of interests, emotions, or affect; to failure to initiate or respond to social interactions.

2.       Deficits in nonverbal communicative behaviors used for social interaction, ranging, for example, from poorly integrated verbal and nonverbal communication; to abnormalities in eye contact and body language or deficits in understanding and use of gestures; to a total lack of facial expressions and nonverbal communication.

3.       Deficits in developing, maintaining, and understanding relationships, ranging, for example, from difficulties adjusting behavior to suit various social contexts; to difficulties in sharing imaginative paly or in making friends; to absence of interest in peers.

Specify current severity:

Severity is based on social communication impairments and restricted repetitive patterns of behavior (see Table 2).

B.      Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history (examples are illustrative, not exhaustive; see text):

1.       Stereotyped or repetitive motor movements, use of objects, or speech (e.g., simple motor stereotypies, lining up toys or flipping objects, echolalia, idiosyncratic phrases).

2.       Insistence on sameness, inflexible adherence to routines, or ritualized patterns or verbal nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat food every day).

3.       Highly restricted, fixated interests that are abnormal in intensity or focus (e.g, strong attachment to or preoccupation with unusual objects, excessively circumscribed or perseverative interest).

4.       Hyper- or hyporeactivity to sensory input or unusual interests in sensory aspects of the environment (e.g., apparent indifference to pain/temperature, adverse response to specific sounds or textures, excessive smelling or touching of objects, visual fascination with lights or movement).

Specify current severity:

Severity is based on social communication impairments and restricted, repetitive patterns of behavior (see Table 2).

C.      Symptoms must be present in the early developmental period (but may not become fully manifest until social demands exceed limited capacities, or may be masked by learned strategies in later life).

D.      Symptoms cause clinically significant impairment in social, occupational, or other important areas of current functioning.

E.       These disturbances are not better explained by intellectual disability (intellectual developmental disorder) or global developmental delay. Intellectual disability and autism spectrum disorder frequently co-occur; to make comorbid diagnoses of autism spectrum disorder and intellectual disability, social communication should be below that expected for general developmental level.

Note: Individuals with a well-established DSM-IV diagnosis of autistic disorder, Asperger’s disorder, or pervasive developmental disorder not otherwise specified should be given the diagnosis of autism spectrum disorder. Individuals who have marked deficits in social communication, but whose symptoms do not otherwise meet criteria for autism spectrum disorder, should be evaluated for social (pragmatic) communication disorder.

Specify if:
With or without accompanying intellectual impairment
With or without accompanying language impairment
Associated with a known medical or genetic condition or environmental factor
(Coding note: Use additional code to identify the associated medical or genetic condition.)
Associated with another neurodevelopmental, mental, or behavioral disorder
(Coding note: Use additional code[s] to identify the associated neurodevelopmental, mental, or behavioral disorder[s].)
With catatonia (refer to the criteria for catatonia associated with another mental disorder, pp. 119-120, for definition) (Coding note: Use additional code 293.89 [F06.1] catatonia associated with autism spectrum disorder to indicate the presence of the comorbid catatonia.)

Table 2  Severity levels for autism spectrum disorder

Severity level Social communication Restricted, repetitive behaviors
Level 3
“Requiring very substantial support”
Severe deficits in verbal and nonverbal social communication skills cause severe impairments in functioning, very limited initiation of social interactions, and minimal response to social overtures from others. For example, a person with few words of intelligible speech who rarely initiates interaction and, when he or she does, makes unusual approaches to meet needs only and responds to only very direct social approaches
Inflexibility of behavior, extreme difficulty coping with change, or other restricted/repetitive behaviors markedly interfere with functioning in all spheres. Great distress/difficulty changing focus or action.
Level 2
“Requiring substantial support”
Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with supports in place; limited initiation of social interactions; and reduced or  abnormal responses to social overtures from others. For example, a person who speaks simple sentences, whose interaction is limited  to narrow special interests, and how has markedly odd nonverbal communication.
Inflexibility of behavior, difficulty coping with change, or other restricted/repetitive behaviors appear frequently enough to be obvious to the casual observer and interfere with functioning in  a variety of contexts. Distress and/or difficulty changing focus or action.
Level 1
“Requiring support”
Without supports in place, deficits in social communication cause noticeable impairments. Difficulty initiating social interactions, and clear examples of atypical or unsuccessful response to social overtures of others. May appear to have decreased interest in social interactions. For example, a person who is able to speak in full sentences and engages in communication but whose to- and-fro conversation with others fails, and whose attempts to make friends are odd and typically unsuccessful.
Inflexibility of behavior causes significant interference with functioning in one or more contexts. Difficulty switching between activities. Problems of organization and planning hamper independence.

 

 

 

This is  a great movie and really helps explain what autism is – and also how much of a gift it is. It is about Dr. Temple Grandin, a very accomplished woman with autism. She has authored many books, she revolutionized the cattle industry, and she is a college professor. Click here for more info about the movie.

Let’s celebrate what makes us different and accept people for who they are. And always remember the great words of Eustacia Cutler, Dr. Temple Grandin’s mom: “Different … But Not Less.”

For more info about Dr. Temple Grandin click here 🙂

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2 Comments (+add yours?)

  1. aspergersmom
    Jan 06, 2011 @ 21:38:14

    I had such a similar experience to you when it came to my concerns. I asked my pediatrician about the behaviors that didn’t seem to make sense and my concerns were dismissed. However, I did not have nearly the experience or language you had to articulate my concerns. It took me nearly 5 years to get a diagnosis, but it made such a difference when we did.

    I enjoy your blog and will be visiting more often!

    Reply

    • Super Mom Jess
      Jan 07, 2011 @ 11:58:15

      Thank you very much. I think we have a great pediatrician, but she just really didn’t understand what autism was and what to look for. I am thankful we live in a time of increased awareness and hopefully these kids will start getting diagnosed earlier. I feel like I wasted a year just trying to get people to listen to my concerns.

      I am so glad you enjoy my bog – I am new to this but having a lot of fun. Think I found my new hobby for sure 🙂

      Reply

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