Facts about Asperger's Syndrome
By Holly Bortfeld
The new DSM-V proposes to remove the diagnosis of Asperger’s Syndrome but when reading the new diagnostic criteria, you may realize you/your child no longer fits the definition of Autism Spectrum Disorder and may, or may not, meet the criteria for a new diagnosis called Social Communication Disorder – which has no therapies, treatments, programs or insurance coverage. So for now, let’s talk about Asperger’s Syndrome as it exists in the DSM-IV criteria.
Here is the diagnostic criteria for Pervasive Developmental Disorders including Asperger’s Syndrome and Autism.
Asperger’s versus Autism: What’s the difference?
Autism is a spectrum disorder and includes Asperger’s, PDD, and autism. They are all “Autism Spectrum Disorder” by definition. There are many similarities but they do have a few marked differences.
Age of Diagnosis: Children with Autism usually are diagnosed before they are 5 years old where the median age of children diagnosed with Asperger’s is 8-10. 80% of children with autism have a significant regression and loss of skills, where children with Asperger’s may have a more subtle change, or no seen regression.
The tipping point to diagnosis for those with Asperger’s typically seems to be in first/second grade when children are expected to make and keep friends. Most children with Asperger’s can make friends quite easily but cannot keep them, as their interests are too narrow to hold the attention of other children. That difference shows itself most prevalently around second grade.
Psychiatric Conditions: Depression and anxiety are co-morbid conditions of Asperger’s Syndrome. These are not typically found in people with autism.
Cognition: The diagnostic criteria for Asperger’s says: There is no clinically significant delay in cognitive development or in the development of age-appropriate self-help skills, adaptive behavior (other than in social interaction), and curiosity about the environment in childhood. Children with Asperger’s often test out at genius level IQs which is part of why they get overlooked or end up with 504 plans instead of IEPs – they are not “delayed enough”. Children with autism generally have significant cognitive delays.
Language: the diagnostic criteria for autism says: “There is no clinically significant delay in language (e.g., single words used by age 2 years, communicative phrases used by age 3 years).” But if you ask parents of children with autism, their kids fit that model too, yet have autism, not Asperger’s. Conversely, if you ask parents of children with Asperger’s, they may or may not have had a speech delay. Because many with autism do not speak after regression for years (or ever again), this is one point that is usually brought up as defining, when it really shouldn’t be.
The term “Little Professor” is commonly brought up about children with Asperger’s as they can talk at length with adults and use conversationally appropriate language, facts and figures about the subject, like an adult expert might do. If you only read a transcript of their conversation, you likely wouldn’t know it came from a child.
Fitting in aka “Quirky” and “Passable”: People with autism can’t be missed. They don’t really blend in. Their stimming, vocal and physical, is a huge tip off, plus many aren’t potty trained, have no safety awareness, have no meaningful verbal language and many other signs most people can spot from a mile away. People with Asperger’s, on the other hand can generally fit right in, at least for a while. Often called quirky, which is a nice word, but doesn’t fit a person with autism, who are much more involved. Many people will say to me, “I cannot tell your daughter has Asperger’s, she seems “normal” to me”. Until they spend a little one-on-one time with her. Yes, she’s brilliant but she’s lacking a number of skills that she should have learned intrinsically. With those missing skill gaps, people with Asperger’s can seem pedantic and stilted to neurotypicals.
Children with Asperger’s will tell you that they KNOW they are different from their peers. In both school and home settings, they are forced to interact. They tend to be ostracized and it hurts their feelings, rightfully so. Adults tend to self-isolate for a number of reasons including sensory comfort and ease, not fitting in or wanting to do the same activities as peers.
Let’s Talk Treatments
People with Asperger’s still use many of the same treatments as those with autism, such RDI, Occupational and Speech therapies but may access them differently, such as OT for dysgraphia and tactile defensiveness, Speech for functional and social language, RDI for social engagement skills, etc.
Self-Esteem and Self-Advocacy
Self-advocacy, or speaking up for one’s self, is a very important skill for people with disabilities. But it can also be very difficult. Self-advocacy requires certain skills that a child with autism (especially one who has had many years of ABA – and therefore been taught to just do, without thinking) will likely have to be taught. They do not learn these skills intrinsically like their non-disabled peers. This lack of self-advocacy affects self-esteem in a negative way. Read more here.
Social skills can be anything from taking turns, to not interrupting conversations, to not telling “too much” truth (telling an overweight person that they are “fat”), to conversational skills and to making and keeping friends, to name just a few. Kids with ASD don’t learn intrinsically or pick up on social cues, verbal or nonverbal, like typical peers do so they must be taught. The difference in behavior also becomes more visible when kids become teens. In the teen years, typical peers generally are less accepting of behaviors so ASD kids are often ostracized and bullied, making it harder for them to fit in, at a time in their lives when fitting in is at its most important. Read more here.
Basic living skills are laundry, cooking, cleaning, getting dressed, shaving, personal hygiene, shopping, ordering at a restaurant, paying bills, working, taking vitamins or pills, making healthy choices, exercise, advocating for themselves, navigating their community, and making and keeping friends. Some life skills overlap with social skills of course and both are necessary to live a safe, fulfilling life. Read more here.
Psychiatric Conditions: Anxiety and Depression
Treatment options include physical exercise (the MOST effective)**, neurotransmitter calmers like 5HTP and self-esteem and self-advocacy skills to lessen depression and anxiety. Diet and Medical interventions also play a key role in lessening these comorbid conditions.
More on physical exercise and activities.
Self-regulation is key to keeping calm, coping skills and easing anxiety.
Calming techniques include:
- A sensory diet to include things like sensory breaks throughout the day with a quiet place to decompress; weighted vest, deep pressure massage, swinging, bouncing, and use of the Wilbarger Protocol.
- Using visual or written schedules to help them know what is going to happen during their day.
- Epsom salts baths
- Supplements like GABA, taurine, EFAs, B6, inositol, 5HTP, Magnesium, l-theanine and others that slow neurotransmitters.
- Removing the offenders like food colorings and preservatives, excitotoxins like MSG and aspartame and caffeine.
- If your child is able to participate in therapy, such as with a counselor or psychologist, it may help for them to talk it out and get advice on how to deal with the situations they are having problems coping with or understanding.
- Tai Chi or Yoga
- Cardio exercise
- 1-5 scale of frustration
Diet and Medical treatments
What seems to be the most different in Medical is the response to oxytocin and MB12. People with Aspergers do much better with Oxytocin, 5HTP and other neurotransmitter calmers and much worse with MB12 than those with autism, but according to our families and the ARI’s Parent Ratings, the rest of the treatments are similar in efficacy, most notably dietary intervention, averaging the same efficacy.
ARI's Autism Treatment Ratings
ARI's Asperger Treatment Ratings
Read: How to start Medical Treatments with an older/Asperger child
Read: How to start the diet with an older/Asperger child
Some things the person with Asperger’s can do for themselves
- Surround yourself with supportive upbeat people, people who like you. Funny is good too.
- Learn something new, often. The more skills and interests you have, the more varied a life you can have. Success at new things builds self-esteem fast!
- Focus on the positive. Don’t dwell on things you cannot change, there’s no point.
- Stay healthy – eat right, stay away from alcohol and drugs, get enough sleep, take your vitamins and exercise!
- Get involved. If you don’t have a job, go volunteer! There are many places that need help, including programs for kids with autism and Asperger’s.
- Try, try again.
Typical Barriers and Solutions for people with Asperger’s
As always, the future depends on what you do today, so with treatment and therapies to address these typical symptoms of Asperger’s, “Aspies” can do anything! Without those skills and supports, however, the outlook is not unlike that of people with autism. There is much work to be done, but a great hope for the future.
References for Exercise treatment
Autism Journey Blueprints
Parent Mentor Program
Find a TACA Chapter near you
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