Grandparent’s Guide to “Types” of Autism

“Tell me about your grandchildren,” is one of the questions that grandparents most often get. And we autism grandparents often hear this question about our grandchildren: “What type of autism?”

When we gain a level of comfort in answering this question, it not only helps us understand our grandchild better, but it can also contribute to the entire family’s (including the parents) understanding.

Formerly used terms such as “high-functioning,” “disintegrative disorder,” and “pervasive development disorder” are no longer recommended – the reason being that autism is so unique with each individual that it’s simply not possible to come up with a descriptive list of three or five or even five hundred specific categories.

Here’s an accurate statement: “Autism Spectrum Disorder is an umbrella term for complex neurodevelopmental disorders that affect communication and behavior.” Each person with autism is affected differently. Even the often-used adjectives “mild” and “severe” are too loaded with assumptions to be effective.

It may be best for each of us autism grandparents to develop our own few sentences to describe our grandchildren.

For example, “Mary is on the autism spectrum. She’s in regular school and is a happy child, and on first glance you may not notice anything different about her, but she’s behind the other children both intellectually and developmentally. She loves making friends and playing with them, and she’s working hard on learning to interact with them appropriately.”

Or, “Frank is on the autism spectrum. He’s in his own world and doesn’t talk much and has real difficulty interacting with other persons. And we continue to work on the major challenge he has when it’s time to shift his attention to something else. He needs a lot of support.”

When you research autism you find continual references to the American Pediatric Association’s 2013 Diagnostic Statistical Manual of Mental Disorders (DSM-5 – meaning this is the fifth and most recent such manual they’ve issued). The DSM-5 is the most recognized and accepted reference, and it has lumped everyone on the autism spectrum into three categories according to how much support is required.

LEVEL 1 – “Requires Support”

These persons may have noticeable differences with verbal and non-verbal communication skills, difficulty changing focus or action, etc.

LEVEL 2 – “Requires Substantial Support”

These persons may exhibit things such as inflexible behaviors, interactions that are limited to narrow special interests, etc.

LEVEL 3 – “Requires Very Substantial Support”

These persons may be non-verbal, may have exhibit great distress when changing focus or action, etc.

But even if we use these levels to describe our grandchildren, it’s almost certain that a more personal description will be more helpful. So the bottom line is that there is no good answer to “type” of autism. We autism grandparents can be helpful by being family leaders in crafting an appropriate brief description of the nature or our grandchild’s autism.

Diagnosing Autism

The American Academy of Pediatrics now recommends that all children should be screened for autism at their 18- and 24-month checkups. Parents usually have their hands full tending to all of the daily tasks associated with babies and toddlers, and they may not notice things that may be obvious to grandparents. Grandparents are often the first persons to notice signs of autism. We grandparents can be helpful by taking on the responsibility of knowing what those signs are and being vigilant.

The American Psychiatric Association’s most recent Diagnostic and Statistical Manual of Mental Disorders (DSM-5) presents the following criteria for an “official” autism diagnosis.

There must be “persistent deficits” in all three of the following:

✔Social-emotional reciprocity (e.g. relating appropriately to others with back and forth communication and sharing of emotions).

✔Non-verbal communication behaviors (e.g. eye contact, facial expressions, gestures).

✔Understanding and maintaining relationships (e.g. making friends, sharing play, interest in others).

AND there must be persistent deficits in at least two of the following four:

✔Repetitive motor movements (e.g. lining up objects, idiosyncratic phrases).

✔Insistence on sameness (e.g. same food, same routines).

✔Abnormally intense fixations (e.g. excessive preoccupations with specific things or topics, strong attachments to unusual objects).

✔Hypo- or hypersensitivities (e.g. indifference to pain or temperature, fascination with lights.)

The pediatrician is usually the frontline professional who monitors and evaluates a child’s health. But there is no lab test, no x-ray, no blood test, etc. that can diagnose autism, and autism includes a very wide range of symptoms. And autism can range from severe mental disabilities to a very high intellect and independent living. Three typical milestones that a pediatrician looks for are smiling by six months, mimicking sounds and facial expressions by nine months, and babbling by twelve months.

The pediatrician may ask questions such as whether there is sensitivity to light or noise or temperature, whether there is a tendency towards anger, whether there are problems with eating or sleeping, and whether there is appropriate response when you attempt to get the child’s attention.

Other professionals who may be involved to help with a diagnosis include child psychologist, speech-language pathologist, occupational therapist, developmental pediatrician, and neurologist.

If a child is suspected for autism, this team of professionals may do periodic evaluations up until the age of 5 or longer.

We grandparents can not only give love and support, but also be continually knowledgeable about the fundamental symptoms of autism and speak up when we notice suspicious things. The sooner an autism diagnosis is made, the sooner appropriate therapies can begin. And research has shown that the earlier the therapy begins the better.

Transitioning

Transitioning – changing from one activity or setting to another – is a common challenge for persons on the autism spectrum. Autistic persons are usually most comfortable with sameness and predictability; shifting attention from one thing to another in an environment that feels confusing and overwhelming can not only be a challenge but can cause a meltdown. Research has shown that approximately 25% of each day – whether at school, at home, at work, or wherever – is spent transitioning.

We grandparents should be aware of five things that can help with transitioning.

1. EXPLANATION – Explain what the next thing (location, activity, project) will be. “Next we will go into the kitchen. The kitchen is the room where we prepare food for our meals. It has a refrigerator and a stove . . . While there we will prepare our lunch.”
   

2. CUE – A cue is a visual and/or verbal symbol for the next location or activity or project. For example, saying the word “kitchen,” or showing a photo of the kitchen or the word “kitchen” written on a small card, are examples of cues. A cue can be a helpful part of a transition.
   

3. COUNTDOWN – A countdown is simply the allowance of a certain amount of time to pass between the cue and the actual transition. “In 3 minutes we will go to the kitchen . . . 2 minutes left . . . now only 1 minute . . . “ The countdown can be long or short depending on the type of transition. For example, if you are at a playground getting ready to go home, you may use a 10-minute countdown: “In 10 minutes we will go home, so enjoy these remaining minutes here at the playground. . . Still 9 minutes left to play . . . etc.” A clock is countdown device that can be very effective if the person understands clock movements. If not, there is a clock-like device called a Time-Timer that shows the remaining time in an ever-shrinking section of red. Another idea is to use color Post-It notes that are removed each minute. Regardless, a countdown of some sort can be very helpful. But one warning. Phrases such as “Just a second,” “In a minute,” and “In a while” are often not easy for a child with autism to comprehend appropriately. It’s best to stick to precise time intervals.
   

4. POSITIVE REINFORCEMENT – “Wonderful! You walked into the kitchen without any problems. I am so proud of you! Here is a special sticker.” Positive reinforcement can consist of praise or a reward (candy, screen time, etc.) or both. “You did so well leaving the playground, and I’m proud of you. As a reward, you can now play with your Amazon Fire.”

Successful transitioning is often not as simple as those four steps, but they can provide an effective foundation.

Persons with autism often have trouble with sequencing and understanding relationships between steps, so when transitioning it’s best to focus on as few steps as possible. Also, persons with autism often don’t recognize “clues” to forthcoming transitions: other students packing their backpacks, putting purchased items into the bag at the store, etc. Thus the need for cues, etc.

A variety of factors can contribute to the difficulty level of a specific transition: length of time, difficulty, enjoyability, etc. Same with environmental factors such as loudness, crowdedness, etc.

In Nancy Mucklow’s book, GRANDPARENT’S GUIDE TO AUTISM SPECTRUM DISORDERS, she offers “The Ten-Second Room Zoom.” When you take your child to a new place, stop at the entrance and narrate what you see and what you’re thinking: “This room has a lot of people, some sitting and some standing and some walking around. We will have to decide which we will do. And we will want to move carefully so we don’t bump into other people . . .” She notes that this raises awareness and helps them learn to match their actions to specific situations.

And finally, it’s a good idea to always have a meltdown contingency plan – what you’ll do in case of a meltdown. (This topic has been addressed in a previous article in the Blog section of the Autism Grandparents Club website.)

The bottom line is that transitions are problematical for persons with autism, and we grandparents can help our own grandchildren make continual progress with navigating them.