What to Expect After the Diagnosis of High-Functioning Autism

Most of the time, High-Functioning Autism (HFA) - or Aspergers - is diagnosed by a developmental doctor, neurologist, psychologist, or team of professionals. The diagnosis is made on the basis of behaviors, delays, and language deficits. That means that no one can diagnose HFA in an infant, and unless your youngster has Rett syndrome or Fragile X, no medical test can "prove" that a youngster truly has the disorder.

Most professionals will provide a specific diagnosis on the spectrum. You may walk away with a diagnosis of Level 1 Autism, Level 2, or Level 3. Occasionally, your youngster will receive additional diagnoses such as "social anxiety" or "non-verbal learning disorder." All of these are descriptive of your youngster's behaviors, and different diagnosticians may give different labels depending on their experience and preference.

What parents can expect from their child’s physician after the diagnosis:

1. Your physician may offer suggestions for treatment. He may support your suggestions for additional treatments. But don't expect your physician to have any idea how you are supposed to pay for those treatments. While some may, in fact, be covered under insurance and/or early intervention programs, it's rare to find a physician who can guide you through that maze.

2. Moms and dads will wonder whether they should press to have their youngster included in typical classrooms, provided with a special class, or educated privately. Since every youngster, school, classroom and program is different -- and since physicians have never seen your youngster in a group setting -- reputable physicians will rarely recommend specific educational setting for your youngster.

3. Your physician can't tell you for sure which treatments will work for your youngster. He may recommend a particular diet, supplement, or treatment program. But until you try it, there's no way to know whether it will work for your individual son or daughter.

4. Unless your youngster has Fragile X or Rett syndrome (both of which can be identified through genetic markers), your doctor will not know why your youngster has HFA. Depending on his leanings, you may hear words like "genetics," "vaccines," or "inflammation." But the truth is that no physician has enough information to reliably explain the factors that lie behind your youngster's diagnosis.

5. Most moms and dads will ask questions (e.g., “Will my youngster get better?”). Most reputable physicians will respond with vague answers – or even no answer at all. That's because no one really knows how far your youngster will develop, and even kids with profound disabilities can amaze moms and dads and professionals with their developmental leaps.

6. While some physicians may recommend specific biomedical treatments, neither they nor any other medical professional can tell you which of the many available non-medical treatments will be best for your youngster. They may suggest applied behavior analysis (ABA) based on a general understanding that ABA is well-researched. But no expert can tell you whether ABA is a better choice than, say, cognitive behavioral therapy (CBT).

What ABA involves:

Done correctly, ABA intervention for HFA is not a "one size fits all" approach consisting of a "canned" set of programs or drills. On the contrary, every aspect of intervention is customized to each child's skills, needs, interests, preferences, and family situation. For those reasons, an ABA program for one child might look somewhat different than a program for another child. But genuine, comprehensive ABA programs for these children have certain things in common:
  • Abundant positive reinforcement for useful skills and socially appropriate behaviors
  • An emphasis on positive social interactions, and on making learning fun
  • An emphasis on skills that will enable HFA children to be independent and successful in both the short and the long run
  • Detailed assessment of each child's skills as well as child and family preferences to determine initial treatment goals
  • Frequent review of progress data by the behavior analyst so that goals and procedures can be "fine tuned" as needed
  • Instruction on developmentally appropriate goals in skill areas (e.g., communication, social, self-care, play and leisure, motor, and academic skills)
  • Intervention designed and overseen directly by qualified, well-trained professional behavior analysts
  • Intervention provided consistently for many hours each week
  • Many opportunities - specifically planned and naturally occurring - for each child to acquire and practice skills every day, in structured and unstructured situations
  • No reinforcement for behaviors that are harmful or prevent learning
  • Ongoing objective measurement of child progress
  • Parent training so family members can teach and support skills during typical family activities
  • Regular meetings between family members and program staff to plan, review progress, and make adjustments
  • Selection of goals that are meaningful for the child and the family
  • Skills broken down into small parts or steps that are manageable for the child, and taught from simple to complex
  • Use of multiple behavior analytic procedures - both adult-directed and child-initiated - to promote learning in a variety of ways
  • Use of techniques to help trained skills carry over to various places, people, and times, and to enable HFA children to acquire new skills in a variety of settings

Competently delivered ABA intervention can help HFA and Aspergers children make meaningful changes in many areas. Quality ABA programs address a wide range of skill areas, but the focus is always on the individual child, so goals vary from child to child, depending on age, level of functioning, family needs and interests, and other factors. The rate of progress also varies from one child to the next. Some acquire skills quickly, others more slowly. In fact, an individual child may make rapid progress in one skill area (e.g., Math), but need much more instruction and practice to master another (e.g., interacting with peers).

What CBT involves:

Children on the autism spectrum can be prone to depression, anxiety, obsessive-compulsive disorders and other mental health issues. CBT is one of a range of treatment options. It is a psychotherapy based on modifying everyday thoughts and behaviors, with the aim of positively influencing emotions. The particular therapeutic techniques vary according to the particular child or issue, but commonly include keeping a diary of significant events and associated feelings, thoughts and behaviors; questioning and testing assumptions or habits of thoughts that might be unhelpful and unrealistic; gradually facing activities which may have been avoided; and trying out new ways of behaving and reacting.

Relaxation and distraction techniques are also commonly included. CBT is widely accepted as an evidence-based, cost-effective psychotherapy for many HFA clients. It is sometimes used with groups as well as individuals, and the techniques are also commonly adapted for self-help manuals and, increasingly, for self-help software packages.

CBT is based on the idea that how we think (cognition), how we feel (emotion) and how we act (behavior) interact together. Specifically, our thoughts determine our feelings and our behavior. Therefore, negative - and unrealistic - thoughts can cause us distress and result in problems. One example could be a child who, after frequent bullying and failed attempts at making friends, thinks "Nobody likes me." This will impact negatively on mood, making the child feel depressed; the problem may be worsened if the child reacts by avoiding social activities all together. As a result, a successful experience becomes more unlikely, which reinforces the original thought of being "hated."

In therapy, this example could be identified as a self-fulfilling prophecy or "problem cycle," and the efforts of the therapist and the child/teen would be directed at working together to change this. This is done by addressing the way the child/teen thinks in response to similar situations and by developing more flexible thought patterns, along with reducing the avoidance of social activities. If, as a result, the child/teen escapes the negative thought pattern, the feelings of depression may be relieved. The child/teen may then become more active, succeed more often, and further reduce feelings of depression and anxiety.

The Bottom Line:

Even today, the disorder is a mystery. No one really knows for sure what causes it, what cures it, or even what it is. Some physicians will give you their opinion. But the moment you start digging deeper, you'll find that there are many other well-supported opinions out there. This doesn't mean your physician can't help at all, but it does mean that you'll have to look elsewhere for direction as you think through treatment options, educational settings, behavior management and other issues. For example:
  • Autism conferences, which are now held all around the world
  • Books (check carefully to be sure you know who the author is and whether he or she has a particular ax to grind)
  • Parent support groups, which offer a wealth of experience in areas ranging from therapies and therapists to schools and school programs
  • Regional centers, which offer a range of services and treatment options
  • School-based parent education programs
  • The Internet

In the long run, for better or for worse, you will be making many decisions based on your own parental perspective, knowledge, preferences and comfort level. Of course, that's the case for most parenting decisions, and it seems to be the case that when moms and dads are engaged in the process of helping and working with their autistic youngster, outcomes are improved over time.


Anonymous said...

After the diagnosis ..you're on your own and find out why your child does what he does and go from there ...i was the unlucky one ...and i wont be the last ...good luck for every parent out there :)

Anonymous said...

We are new with the diagnosis and are trying a few suggestions from other parents, one suggestion I have found that works for us is to cut out refined sugar and gluten! We tried giving our son something with refined sugar after a few days and he got very angry and violent...God be with you all, you are not alone although it may feel that way!

Anonymous said...

Great article!! My daughter is 16 and was just diagnosed in 2010. She, also, has OCD, ADD and several other anxieties. All of these make it difficult to stay with just one course of action. The best advice....know your child. They will always have certain traits that they will keep for the rest of their lives. Work with those and deal with the rest as they come along. The biggest hurdle I've found is that the Aspergers child/teen/adult does not do well with change. I've found that keeping to a certain amount of structure helps her get through the day....even if something unexpected does happen, try to infuse a little bit of their normal structure into it and it helps.

Anonymous said...

I been going through the maze of books and information and find that most of the time my gut instincts is what works best.

Anonymous said...

4 years and counting since our son was diagnosed with Aspergers. He has made dramatic improvements, but we still don't have all the answers. Will he be able to go to college, be able to earn a good living, hold down a job, get married, have kids? My best advice is know your child. No two Aspies are the same, each have there own personalities and quirks. I have found that keeping a notebook or journal of daily activities, problems, etc has helped. Then when "a situation (meltdown,etc)" happens and you can try to identify what was going on that led up to the "event". This has helped us figure out what can set him off or what type situations to avoid. Good luck to all Aspie parents out there! I wouldn't change my son even if I could! He is who God intended him to be!

Sharon said...

Amy, you provide great incite as to what to expect after your child is diagnosed with aspergers syndrome. I found this continuing education website to be extremely helpful because it provides techniques on how to help handle a child with aspergers.


Aideen(from FB) said...

Very helpful. Thank you. Just figuring tings out and I needed to be told nobody has the answers. Just like before the diagnosis well have to continue to make our own choices on how best to support our child.

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