If you have just found out – or if you suspect – that you or someone in your care has Asperger’s Syndrome (AS), you may feel as bewildered as Alice in Wonderland, just after she fell down the rabbit hole! It’s a whole new reality now, and you are probably going to need a guide or two to find your way around this new world. You may feel confused and overwhelmed, as you struggle to absorb a lot of new information, to decide what you need to do, and to figure out where to turn for help. You may find yourself asking: “What kind of help do I need? What is the right combination of service and supports to ensure the best possible future for me, or for my child? And where can I turn to obtain these services? What kinds of people, with what kings of titles and training, can help me most effectively?” Because the good news is, there are a lot of medical and mental health professionals out there – and the bad news is, there are a lot of medical and mental health professionals out there!
To whom should you turn if your kid with AS is driving you or his teachers crazy with his behavior, or if you think you need medication? What are “social pragmatic language” and “sensory integration,” which everyone in the parent support group is talking about? Are these things you or your kid needs- and who can provide those kinds of help? Do you need the services of a psychiatrist, psychologist, neurologist, neurophysiologist, or a psychopharmacologist? A social work, occupational therapist, a developmental or behavioral pediatrician? Yikes! Where do you start?
If you have not already done so, your first priority should be to get an official, properly documented diagnosis. For both adults and children with AS (or other conditions on the autism spectrum), the diagnosis serves as your starting point for securing future treatment, service, and support. For children, the diagnosis is essential for obtaining services from public schools; these services will be outlines in an Individualized Educational Plan (or “IEP”). The AS diagnosis may help adults qualify for important social security benefits, housing, or employment assistance from agencies like Mass Rehab. To obtain a diagnosis, you will probably need to get an evaluation from a neurophysiologist, psychiatrist, psychologist, or…– but be sure that this professional also has experience with AS. Don’t be shy! If you suspect you or your child has AS, be sure to ask about the professional’s degree of past experience with AS. This professional will administer a range of cognitive and projective tests to determine the diagnosis. The same person will also write up a formal report, which will be an important tool for communicating with the school system or government agencies from which you will be requesting services.
Once you have the diagnosis, you will probably wish to have the support and expertise of one or more professionals who can help with specific issues. AS is a very complex condition; individuals with AS differ widely in their needs—the needs of each “Aspie” (individual with AS) will probably change significantly over time. Most individuals or families whose lives are affected by AS benefit a lot from having one knowledgeable professional who gets to know you or your child well, follows the Aspie’s progress over time, sees the “big picture,” and can help you choose which interventions and therapies will be most helpful in the current situation or stage of development. This person might be a social worker, a psychiatrist, behavioral psychologist, and education consultant. He or she should be someone who knows a lot about AS, and with whom you have a friendly and mutually respectful relationship, so that you can call them with questions or problems as they come up. This person may also be able to serve as an advocate for you or your child, since personnel in school systems and government agencies sometimes respond better to other professionals who “speak their language” or have clout.
Let us introduce you to some professionals who work with people with AS, and who may be helpful to you. We have asked a psychiatrist, a psychologist, a social worker and a neurophysiologist, and member of a developmental team, to describe their role in supporter and serving someone with AS. Others in the same profession may offer different services or take a different approach, but we hope that the essays below will prove helpful, and we thank all our contributors.
This list of professionals that can help the individual with Asperger’s Syndrome and their family is by no means complete. Hopefully this article will serve as a guide indicating where to start looking for an appropriate professional. Individual choices will necessarily be based on logistics, cost, and your personal rapport with the doctor.
Besides those who wrote for us, other therapist may be enlisted to help with specific develop-mental problems, such as a speech and language pathologist for language therapy/social skills training, or an occupational therapist for ameliorating sensory integration and motor/coordination difficulties. (Maybe we can hear from some of these professionals in future issues of the newsletter.) For a child, these services will often be provided through the public school system. (However, you may need to advocate strongly to get them included in the IEP. If the school resists, you may need an educational advocate or, as a last resort, a lawyer experienced in special education/Chapter 766 laws, to make sure the student gets all the services he or she needs.).
If the school does not provide service your child needs, you may need to seek a private provider. AANE staff, or other families, may be able to help you find someone in your area. Call AANE, talk to the parent in one of our face-to-face support groups, call a parent from the AANE Parent Networking List, or post your problem on AANE’s interactive message board.
|For an Initial Diagnosis, Evaluation or Re-evaluation:Psychiatrist (some)
Neurologist (usally to rule out other neurological issues, although some may give a diagnosis)Behavioral Issues:Social Worker
Clinical PsychologistSpeech Pragmatics / Social Skills:Speech and Language Pathologist
Sensory Issues:Speech and Language Pathologist
PsychiatristFamily Issues:Social Worker
Issues with School Providing Services
766 AdvocateHelp Figuring out What to Do in School:Educational Consultant
Employment Issues:Employment Specialist
The Social Worker
By: Linda Weisberg, LICSW, Newton, MA
Social workers can assist individuals with Asperger’s Syndrome in a number of ways depending upon their age, level of cognitive ability, range of symptom severity, and family concerns.
Social workers provide supportive counseling to parents of young children whose diagnosis is unclear during the preschool years. This uncertainty creates significant stress for parents. Counseling can help parent cope with the wide range of emotions they experience during the diagnostic process and afterwards when the child with Asperger’s Syndrome attends early intervention programs and elementary school. Social workers also aid families in finding appropriate respite care, recreational opportunities, and psychiatric service if medication for the child or other family members is needed.
Many social workers focus on the individual with Asperger’s Syndrome in the context of the family. They are well aware of sibling issues and the strains on the parents’ relationship and help by providing marital counseling, parent guidance and behavior management strategies. Extended family members such as grandparents may not understand the problems of raising a child with Asperger’s Syndrome, and the social worker might recommend a family meeting to help ease tensions.
Adolescents with Asperger’s Syndrome face a number of challenges. A social worker may help them to channel their individual interests to better understand their social relationships and sexuality. As families begin to consider plans for their children beyond high school, social workers provide counseling to ease the transition and to also identify educational and vocational programs and housing options available to young adults.
Independent living and sustaining employment or performing adequately in a supportive job placement can often present challenges for adults with Asperger’s Syndrome. Social workers can offer supportive counseling and clinical case management.
Clinical case management is a directed form of assistance by a social worker, who with the client’s permission, coordinates vocational, residential, and social programs. Family members are usually involved. Supportive counseling for both adolescents and adults with Asperger’s Syndrome includes learning to interpret social situations in order to improve social skills and to appropriately manage work responsibilities.
Social workers may bill insurance companies or an HMO for their services if they are members of provider panels. It is necessary to check with the particular social worker to ascertain if he/she can bill your particular insurance plan. Otherwise, it is possible to pay privately, and some practitioners might offer an extended payment plan or sliding fee.
To find a social worker who can assist you, call the Social Work Referral Service of the Massachusetts chapter of the National Association of Social Workers at 617-720-2828. Also your physician, local school system or local Asperger association might assist with a referral to a social worker.
By: Teresa M. Kohlenberg, M.D, Belmont, MA
The psychiatrist is a medical doctor who has trained in the diagnosis and treatment of emotional disorders, using both “talking” therapy and medication. Psychiatrists usually complete at least a year of basic medical training (internship) and three years training in mental health care of adults, after which Child Psychiatrist add two years training with children and adolescents. There are also some Child Psychiatrists who initial training is in Pediatrics. Child Psychiatry training provides a great exposure to the developmental issues involved in Asperger’s Syndrome and related disorders, as well as the different medications available and their proper use in children. Many (but not all) psychiatrists who work with children with these disorders have gotten additional training or exposure in specialized settings.
What a child psychiatrist offers depends to a certain degree on their training and areas of expertise. The following list starts with the services more child psychiatrist offer, then includes services some, but not all, will offer.
- Perform a thorough evaluation of a child’s/adolescent’s emotional functioning.
- Make a diagnosis of AS and associated emotional or behavioral disorders.
- Suggest further appropriate medical and psychological testing.
- Prescribe and monitor medication as part of a treatment team.
- Provide ongoing individual or group therapy to the child.
- Provide family treatment, developmental a behavioral guidance and support to parents.
- Outline a comprehensive treatment plan in collaboration with psychologists, educators, social workers, and other involved in the child’s care.
- Provide consultation to the schools and attend planning meetings.
- Advocate for the child and family with schools and other agencies.
By: Gary Eisenhower, Ed. M, Marblehead, MA
Appropriate treatment planning for a child with Asperger’s Syndrome involved a constellation of individuals-including informed parents, teachers, psychopharmacists, pediatric neurologists, behavioral psychologists, neurophysiologists, clinical psychologists, etc. In my experience, it seems that the clinical psychologist often plays a coordinating role in the overall treatment plan for the child with Asperger’s.
The clinical psychologist may be initially involved in the diagnosis of Asperger’s Syndrome and associated disorders. Common secondary diagnoses include ADHD, depression, generalized anxiety, or more specific anxiety disorders such as OCD or panic attacks. Treatment of these disorders involves specific therapies and consultation with other professionals.
The clinical psychologist also must help identify and reduce stressors in the environments in which the child functions. As stress is lowered generally around the child with Asperger’s, the child will be able utilize his/her own talents and interests, rather than having to generate inappropriate defenses against troublesome stressors. At a minimum, this will include necessary informational discussions with the child’s family and school regarding appropriate expectations for peer group interactions, family interactions, learning style, etc. Family therapy, Chapter 504 plans, special education plans and summer planning are common interventions at this level of treatment.
The clinical psychologist will likely be involved with the child and family for several year, sometimes on a monitoring relationship two or three times a year, sometimes doing family therapy, and sometimes more frequently and regularly with the child as new concerns may emerge.
By: Suzanne Dowdall, Ph. D, Wellesley, MA
And Kathleen Curran Ph. D, Newton, MA
A neuropsychologist is a licensed psychologist who has received a doctorate (Ph D., Psy. D, or Ed. M) signifying extensive instruction and supervised training, and has received additional specialized training in behavioral, psychological and emotional aspects of neurological disorders. The work they perform includes diagnosis, treatment, as well as consultation regarding a variety of disorders, including Asperger’s.
Evaluative tools employed by neuropsychologists include interviews with both the client and significant others, observations, as well as a wide array of ‘standardized’ tests where and individual’s performance can be compared with their peers) and may include academic and personality tests. This information is integrated to paint a complete diagnostic picture of neuropsychological strengths and weaknesses in a variety or areas (for instance: social-emotional functioning, expressive and receptive language skills, visual/spatial organization, problem solving, memory and learning, attention). Recommendations are created and neuropsychologists will often work collaboratively with a variety of other professionals to share and communicate their findings.
Basing their work on an understanding of the impact of brain functioning on behavior, thinking, learning, and emotion, neuropsychologists are able to help individuals, their families, and other working with them to capitalize on strengths and address difficulties.
The Interdisciplinary Team Assessments for Children with AS
By: Ellen Perrin at the Center for Children with Special Needs, New England Medical Center, Boston MA.
An interdisciplinary team evaluation aims to identify children’s strengths and weaknesses in medical, cognitive, emotional, academic, linguistic, social, motor, and sensory domains, and to integrate them into a coherent picture.
Most interdisciplinary teams are compromised of some combination of developmental-behavioral pediatricians, psychologists, or neuropsychologists, educational specialists, speech/language pathologists, clinical social workers, physical therapists and occupational therapists. An advantage of working with an integrated team is that the information and advice that you will be give is consistent and not contradictory.
Developmental-behavioral pediatricians take a long-term development and ecological view of children and families, and are particularly familiar with the necessity to work together with other professionals and parents. They also can evaluate and treat some of the psychiatric symptoms that often contribute to children’s difficulties. Developmental behavioral pediatricians may be especially helpful in pulling together the various evaluations and recommendations, and in following the child’s and family’s progress over time. Psychologists evaluate the child’s cognitive or intellectual strengths and weaknesses and can identify aspects of the child’s learning and emotional style. Children with AS are often quite bright, but may have subtle organizational problems or rigid thinking styles that affect independent work, organization, written output, and abstract thinking. Educational specialists look at children’s academic skill development in reading, writing, spelling, and mathematics. This assessment helps to determine what educational interventions will be most likely to be effective.
Many children and adults with AS have difficulty with pragmatic language, that is the ability to use language appropriately for social communication and reciprocal social interaction. Speech/language pathologists look at the child’s language functioning, not only in terms of linguistic development and receptive and expressive language, but in the areas of higher-order language and pragmatics. Physical and occupational therapists evaluate and help children to improve the motor clumsiness or visual-motor integration problems which affect their strength, tone, ability to participate in sports and writing tasks in school, and address their sensory integration problems.
Clinical social workers assess how the child is functioning at home and the stressors his/her difficulties may be causing within the family. They help the family identify these issues, provide individual and family therapy, assist with information about resources and referrals to community agencies, and provide support and advice for advocating within the school system.
The advantage of a team of professionals who work together is that you will get one comprehensive evaluation with recommendations that are consistent with each other.