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Making Sense of the DSM-5: "Severity Levels" of Autism

“My granddaughter (7yrs old) was just diagnosed with autism and level 1.5. What does that mean and what's the differences between that and aspergers?”

To answer this question, let’s first look at the new criteria for Autism as described in the DSM 5:

A. Persistent deficits in social communication and social interaction across multiple contexts, as manifested by the following, currently or by history):
  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 play or in making friends; to absence of interest in peers.

B. Restricted, repetitive patterns of behavior, interests, or activities, as manifested by at least two of the following, currently or by history:
  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 of verbal or nonverbal behavior (e.g., extreme distress at small changes, difficulties with transitions, rigid thinking patterns, greeting rituals, need to take same route or eat same 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 interests).
  4. Hyper- or hypo-reactivity to sensory input or unusual interest 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).



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.

The DSM 5 specifies the severity levels of Autism as follows:

Level 1: Requiring Support—
  • Social Communication: With supports in place, deficits in social communication cause noticeable impairments. Has difficulties initiating social interactions, and demonstrates clear examples of atypical or unsuccessful responses to social overtures of others. May appear to have decreased interest in social interactions.
  • Restricted Interests and Repetitive Behaviors: Rituals and repetitive behaviors (RRB’s) cause significant interference with functioning in one or more contexts. Resists attempts by others to interrupt RRB’s or to be redirected from fixated interest.

Level 2: Requiring Substantial Support—
  • Social Communication: Marked deficits in verbal and nonverbal social communication skills; social impairments apparent even with social supports in place; limited initiation of social interactions and reduced or abnormal response to social overtures from others.
  • Restricted Interests and Repetitive Behaviors: RRB’s and/or preoccupations or fixated interests appear frequently enough to be obvious to the casual observer and interfere with functioning in a variety of contexts. Distress or frustration is apparent when RRB’s are interrupted; difficult to redirect from fixated interest.

Level 3: Requiring Very Substantial Support—
  • Social Communication: 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.
  • Restricted Interests and Repetitive Behaviors: Preoccupations, fixated rituals and/or repetitive behaviors markedly interfere with functioning in all spheres. Marked distress when rituals or routines are interrupted; very difficult to redirect from fixated interest or returns to it quickly.

So as you can see, Level 1 would be considered high-functioning Autism. Disability will be common among children with Level 3 Autism and non-existent in Level 1 (where children currently diagnosed with Aspergers will be reclassified).




The new method for diagnosing Autism replaces the five prior diagnoses: Asperger Syndrome, Pervasive Developmental Disorder Not Otherwise Specified (PDD-NOS), Childhood Disintegrative Disorder, and Autistic Disorder. If a child has a pre-existing diagnosis of any of these disorders, he or she is automatically considered to have an Autism diagnosis.

Children who are being newly diagnosed (or re-evaluated) and do not fit into the new criteria for Autism may receive a new diagnosis called Social Communication Disorder. This appears to be an extremely mild version of Autism (the child does not have sensory issues or repetitive behaviors) and is similar in many ways to the old PDD-NOS.

The DSM-5 defines Autism as a single “spectrum disorder,” with a set of criteria describing symptoms in the areas of social communication, behavior, flexibility, and sensory sensitivity. If a child has symptoms in these areas, he or she will probably be diagnosed as “on the spectrum.” When a physician diagnoses a youngster with Autism, it's important to know the severity of the disorder. If the physician does give his/her opinion on the severity, it’s with the disclaimer that it’s only an opinion, not a medical diagnosis. Whether the opinion is that it's severe, or that it's mild, it has no bearing on the actual diagnosis. A youngster with Autism deemed as mild is just as autistic as one believed to be severe. The medical diagnosis for both is exactly the same.

Autistic kids have issues with social interactions, behavioral issues, restricted interests, self-stimulatory activities and sensory issues. So severity in each of these categories needs to be determined to assess severity as a whole. While the severity of Autism is not a diagnosis, physicians who specialize in Autism can tell where a youngster is in relation to the other kids they have treated. The same youngster will get different opinions of severity from different people. Since determining a “Level” is subjective and not a technical diagnosis, there is no right or wrong answer.

The three Autism “levels” raise many questions, for example:
  • Depression and anxiety are very common traits among children on the Autism Spectrum, and this can cause major challenges in typical settings. If a child is bright, verbal and academically capable – but moody and anxious, and therefore in need of significant support in order to function at school – where does he or she fit in?
  • Some children on the Autism Spectrum do fine at home, but need help in the classroom. Others do well in the classroom, but not at home (where there’s less structure). So, in which social settings do children at various levels require “support?”
  • Some autistic children have received adequate therapy to appear “close to normal” when interacting with adults – but have significant problems when playing/interacting with their friends. Others get along well with peers, but not adults (especially authority figures). What type of support do they need?

The severity of Autism changes not only day to day, but also situation to situation. For example, autistic kids may exhibit significant social deficits when trying to play with their peers on the playground -- but in the classroom, they may blend in perfectly with their peers. Autism severity is simply a place to start. It’s something to use to help the youngster make progress by getting more services and to help describe the youngster to therapists, teachers, etc. It’s just a snapshot, not something that reflects the future or the youngster in all situations.

Resources for parents of children and teens on the autism spectrum:
 
 

Sources:
  • American Psychiatric Association. (2000). Diagnostic and statistical manual of mental disorders (4th ed., text rev.). Washington, DC.
  • American Psychiatric Association. (2013). Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC.
 
 
Best comment: Thank you for the great explanations to the new DSM-5. I shared this on my FB page -- your blogs (and your book) are so helpful to me as the mom of a 15-year old Aspie. After reading this, I actually kind of like the new classification. My son wasn't "officially" diagnosed with high-functioning autism until he was 14, because prior to that he had been just diagnosed as ADD, bipolar, and OCD, although they did diagnose correctly the sensory processing disorder when he was 7 (with "borderline Aspergers" at that time as well). He began ABA therapy for the first time just 8 months ago, and started at a non-public school (specifically for kids with autism) five months ago. Between those two major changes in his life, we have seen remarkable improvements in his daily functioning. So it seems to me that it is possible to transition from one level to another due to outside influences, don't you think? Thank you again for such a great post!

Seeking a Diagnosis for Asperger's & High-Functioning Autism

This video answers the questions: If I think my child has Asperger's, should I have him diagnosed? If so, when? And how do you get a diagnosis?





Best Parenting Practices for Raising "Newly Diagnosed" Kids on the Autism Spectrum

"We recently learned that our son has High-Functioning Autism and are concerned about how to approach this new challenge.... his triggers, learning problems, treatments, added stress to our family, how to explain autism to him... etc."

Moms and dads can do a lot to help their kids with High-Functioning Autism and Asperger’s Syndrome. But, it's important to make sure you get the support you need. When you're raising a youngster on the autism spectrum, taking care of yourself is not an act of selfishness—it's a necessity! Being emotionally strong allows you to be the best mother or father you can be to your “special needs” son or daughter.

If you've recently learned that your youngster has High-Functioning Autism (HFA) or Asperger’s (AS), you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a youngster is anything other than happy and healthy, and a formal diagnosis can be particularly scary. You may be unsure about how to best help your youngster. You might be confused by conflicting treatment advice. You may have been told that High-Functioning Autism is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference. These are all common responses.



While it is true that High-Functioning Autism is not something a child simply "out-grows," there are many treatments that can help these kids learn new skills and overcome a wide variety of developmental challenges. Assistance is available to meet your youngster's special needs. With the right treatment plan and a lot of love and support, your youngster will learn, grow and thrive.

Best tips for parents with newly diagnosed children on the autism spectrum:

1. Rather than focusing on how your HFA or AS youngster is different from other kids and what he is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing him to others. Feeling unconditionally loved and accepted will help your youngster more than anything else.

2. Kids with High-Functioning Autism have a hard time adapting what they’ve learned in one setting (e.g., the therapist’s office or school) to others, including the home. Creating consistency in your youngster’s environment is the best way to reinforce learning. Find out what your youngster’s therapists are doing and continue their strategies at home. Explore the possibility of having therapy take place in more than one place in order to encourage your youngster to transfer what she has learned from one environment to another. Also, be consistent in the way you interact with your youngster and deal with challenging behaviors.


3. Become an expert on your youngster. Figure out what triggers his disruptive behaviors and what elicits a positive response. What does your HFA youngster find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects him, you’ll be better at troubleshooting problems and preventing situations that cause problems.

4. When it comes to treatment for High-Functioning Autism, there are a variety of therapies. Some focus on reducing problematic behaviors and building communication and social skills, while others deal with sensory integration problems, motor skills, emotional issues, and food sensitivities. With so many choices, it is extremely important to do your research, talk to treatment experts, and ask questions. But keep in mind that you don't have to choose just one type of therapy.

The goal of treatment should be to treat all of your youngster's symptoms and needs. This often requires a combined treatment approach that takes advantage of many different types of therapy. Common HFA treatments include speech-language therapy, play-based therapy, physical therapy, occupational therapy, nutritional therapy, and behavior therapy.

5. Secure a private spot in your home where your youngster can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your youngster can understand. Visual cues can be helpful (e.g., colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety-proof the house, particularly if your youngster is prone to wild tantrums or other self-injurious behaviors.

6. Create a personalized treatment plan. And keep in mind that no matter what treatment plan is chosen, your involvement is vital to its success. You can help your youngster get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home. When putting together a treatment plan for your youngster, remember that there is no single treatment that will work for every child. Each boy or girl with High-Functioning Autism is unique, with different strengths and weaknesses.

Good questions to get answers to include: How does your youngster learn best (e.g., through seeing, listening, or doing)? What are your youngster’s strengths? What are your youngster’s weaknesses? What behaviors are causing the most problems? What does your youngster enjoy and how can those activities be used in treatment? And, what important skills is your youngster lacking? A good treatment plan will: (a) teach tasks as a series of simple steps; (b) provide regular reinforcement of behavior; (c) offer a predictable schedule; (d) involve the mother and father; (e) build on the youngster's interests; and (f) actively engage the youngster's attention in highly structured activities.

7. Think positive. It’s impossible to predict the course of High-Functioning Autism. Don’t jump to conclusions about what life is going to be like for your youngster. Like everyone else, children on the spectrum have an entire lifetime to grow and develop their abilities.


8. As the parent of a youngster with High-Functioning Autism, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don't wait to see if your youngster will catch up later or outgrow the problem. Don't even wait for an official diagnosis. The earlier kids with on the autism spectrum get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your youngster's development and reduce related symptoms.





9. Every mother or father needs a break now and again. And for a parent coping with the added stress of High-Functioning Autism, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks. Look for respite care options in your area.

10. Figure out the need behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for kids with High-Functioning Autism. When an HFA boy or girl acts-out, it’s often because the parent is not picking up on the child’s nonverbal cues. Throwing a tantrum is his or her way of communicating frustration and getting the parent’s attention.

11. If stress, anxiety, or depression is getting to you, see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling. Marriage or family therapy can also help you work out problems that the challenges of life with an HFA youngster are causing in your marriage or with other family members.


12. Joining a support group is a great way to meet other parents dealing with the same challenges. Moms and dads can share information, get advice, and lean on each other for emotional support. Just being around others in the same boat and sharing their experience can go a long way toward reducing the isolation you may feel after receiving your youngster’s diagnosis.

13. Know your youngster’s rights. As the mother or father of an HFA youngster, you have a legal right to: (a) seek an outside evaluation for your youngster; (b) request an IEP meeting at any time if you feel your youngster’s needs are not being met; (c) invite anyone you want—from a relative to your youngster’s physician—to be on the IEP team; (d) free or low-cost legal representation if you can’t come to an agreement with the school; (e) disagree with the school system’s recommendations; and (f) be involved in developing your youngster’s IEP from start to finish.

14. Learn as much as you can about High-Functioning Autism. The more you know about it, the better equipped you’ll be to make informed decisions for your youngster. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.

15. A youngster coping with High-Functioning Autism is still a kid. For both you and your child, there needs to be more to life than therapy. Schedule playtime when your youngster is most alert and awake. Figure out ways to have fun together by thinking about things that make your youngster smile, laugh, and come out of his shell. He is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your youngster’s company – and from his enjoyment of spending un-pressured time with you.  Play is an essential part of learning and shouldn’t feel like work.

16. Pay attention to your youngster’s sensory sensitivities. Many kids with High-Functioning Autism are hypersensitive to light, sound, touch, taste, and smell. Other HFA kids are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your kid’s disruptive behaviors – and what elicits a positive response. What does she find stressful? Calming? Uncomfortable? Enjoyable? If you understand what affects her, you’ll be better at troubleshooting problems and preventing situations that cause difficulties.

17. Positive reinforcement can go a long way with HFA kids, so make an effort to “catch your child doing something good.” Praise him when he acts appropriately or learns a new skill, being very specific about what behavior he is being praised for. Also look for other ways to reward him for good behavior (e.g., giving him a sticker, letting him play with a favorite game, etc.).

18. Kids with High-Functioning Autism tend to do best when they have a highly-structured schedule or routine. They need and crave consistency. Set up a schedule with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your youngster for it in advance.


More resources for parents of children and teens with High-Functioning Autism and Asperger's:

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Parenting System that Reduces Problematic Behavior in Children with Asperger's and High-Functioning Autism

Understanding the Role of Risperidone and Aripiprazole in Treating Symptoms of ASD

Autism Spectrum Disorder (ASD) is a complex neurodevelopmental condition characterized by social communication challenges and restricted, re...