Unit V: Guidance and Counselling for Persons with ASD
1. Role of Psychologist / Counsellor
2. Cognitive Behavioral Management
3. Training and involving the individual with ASD in the rehab process through understanding of own diagnosis
4. Enabling circles of peer supports
5. Empowering towards self Advocacy
1. Role of Psychologist / Counsellor
The laymen use both these terms interchangeably but the fact is that guidance is a broader term which includes many services and counselling is just one of them. Let us try to understand and define them separately.
What is Guidance ?
The early guidance workers defined guidance as "assistance made available by competent persons to an individual of any age to help him direct his own life, develop his own point of view, make his own decisions and carry his own burdens". (Crow and Crow, 1960).
The most accepted definition of guidance today is "a process of helping an individual to help himself, to know his needs, assess his potentialities, develop life purposes, formulate the plans of action and proceed to realize these under the most favourable conditions provided by the environment".
What is Counselling ?
Counselling is often referred to as the heart of any guidance programme. It is a process of assistance extended by an expert to a needy person in an individual situation. According to English H.B. (1958) counselling is "a relationship in which one person endeavors to help another to understand and solve his adjustment problems".
According to Hahn and McLean "Counselling is a process which takes place in a one-to-one relationship between an individual troubled by problems with which he cannot cope alone and a professional worker whose training and experience have qualified him to help others reach solutions to various type of personal problems".
There are many more definitions of counselling. To summarize, counselling is aimed at :
· bringing about desired changes in the individual for self realisation.
· providing help to solve problems through an intimate relationship.
· personality development.
· prevention of serious emotional difficulties.
· helping an individual to gain self-understanding, self acceptance and self realisation.
· achieving positive mental health.
· improving personal effectiveness.
· resolving the problems.
Traditionally, intervention for children with Autism Spectrum Disorder (ASD) has focused upon reducing interfering behavior and teaching language, academic and self-help skills. More recently there has been a greater emphasis upon social skills awareness and skills to independently navigate the social world. This change is in response to the widening of the diagnostic criteria, allowing for the identification of a greater number of individuals with social skill and social understanding impairments. Prioritizing social skill development within treatment has been essential in improving the lives of all children and adolescents with ASD, regardless of the severity of symptoms presented. This evolution of treatment services has also helped us recognize how counseling services can be an essential companion to skill-based intervention for many individuals on the spectrum. Children experiencing emotional issues such as anxiety, frustration, and depression require counseling services as an instructional intervention and supportive environment to address the challenges of growing up with ASD.
Psychologists are often involved in the process of diagnosing both children and adults with autism. They may also recommend appropriate treatment programs, and/or support the process of evaluation, benchmarking and ongoing assessment.
Developmental and child psychologists work with children to help them engage with others through play, and learn skills such as joint attention (doing something WITH rather than NEAR someone else).
School psychologists may work with autistic students to help them engage with their peers, manage stress, or handle difficult interactions with bullies or general teasing. They may also work with parents and teachers to develop strategies for school success.
Psychologists work with both children and adults with autism to treat issues such as social anxiety, depression, and perseverative behavior (doing or saying the same things over and over again). Psychologists also work with individuals on the autism spectrum to help them manage self stimulation (stims), "autopsy" social interactions, understand social cues, and manage school and work relationships.
Behavioral psychologists are in high demand within the autism community. They may evaluate autistic behaviors to better understand their meaning and purpose, develop behavioral (ABA) programs to teach a wide range of skills, or help families to manage aggression and other problematic behaviors in the home.
2. Cognitive Behavioral Management
Cognitive behavioral therapy may be a treatment option for children with autism spectrum disorder who have other mental health conditions, such as anxiety, depression, or attention deficit hyperactivity disorder. It teaches children to alter their beliefs or behaviors to avoid negative emotions.
Cognitive behavioral therapy has two main parts. The cognitive component helps children change how they think about a situation, whereas the behavioral component helps children change how they react to a situation.
Cognitive behavioral therapy is a short-term, problem-focused approach. The goal is to teach children, as well as their parents, a variety of coping skills to help the child manage difficult situations.
During cognitive behavioral therapy sessions, your child works with a specially trained therapist at the Child Study Center to learn how his or her thoughts, feelings, and behaviors are related and influence each other. In order to change unwanted feelings or problematic behaviors, the therapist teaches your child strategies to modify thoughts and to respond differently during certain situations.
Adolescents can also benefit from cognitive behavioral therapy. This treatment can help teens to develop better social and problem-solving skills, which consequently helps to improve their relationships with others.
Through cognitive behavioral therapy, children and parents gain a better understanding of the difficulties experienced by the child. This type of therapy teaches an array of coping skills to help children manage emotional distress. This can also help the child to manage the physical symptoms, negative thoughts, and problematic behaviors that often accompany this type of distress.
Benefits of Cognitive Behavioral Therapy for Autism
Reduce anxiety in patients with autism spectrum disorder
Anxiety is a common and impairing problem in those with autism. Many patients with autism will also receive another diagnosis, with several medical conditions linked to the disorder.
According to a study by researchers at York University, about 70% of children with autism will face some form of emotional problems. Approximately half of these children will have anxiety and 25-40% percent will experience anger or depression. Furthermore, the study found that CBT helped patients with autism to cope with, and manage, not only their anxiety, but also any additional emotional issues they experienced.
Help Patients Handle Stressful Situations
Children and adolescents with autism may have difficulty handling stressful situations. Cognitive behavioral therapy is recommended for children with mild symptoms of autism. The therapy aims to define the triggers of certain behaviors, so the child can identify the scenarios themselves. For instance, when children learn the practical responses needed for a certain situation, they will also learn to cope with any accompanying anxiety and fear. As a result, they can reduce negative thoughts and swap them with positive ones.
Help Individuals to Change Maladaptive Beliefs
Those with autism may show maladaptive beliefs, which can be defined as beliefs that are false or irrational, including negative thoughts. Some of these beliefs include “all or nothing” thinking. This unhelpful thinking style is also called “black and white” thinking, wherein the patient thinks about the extremes of a situation. For instance, if a patient thinks about their ability to complete a task, they might say they’ll do really well or terribly.
Another negative thinking style is when the patient generalizes everything based on a single event. If an individual with autism fails a task, they may believe that they’ll fail any other tasks they’re set. Lastly, personalization is a negative thinking style wherein the patient blames themselves for something that was not completely their fault. Cognitive behavior therapy has been found to be effective in addressing these thinking styles in those with autism.
Cognitive behavioral therapy has been present since the 1960s, and it’s still being used until today. Aside from mental health issues, CBT has been proven to be effective for children and adolescents with autism.
3. Training and involving the individual with ASD in the rehab process through understanding of own diagnosis
Many parents are fearful that labeling their child as having an autism spectrum disorder (ASD) will make him or her feel broken, or that they may use their label as an excuse to give up and not try. Adults on the autism spectrum have found the opposite to be true. Giving your child information on the nature of his/her differences will give them a better understanding and the motivation that is needed to drive through challenges.
Discussing an autism spectrum diagnosis with your child is an important issue and one for which many parents seek advice.
Parents go through a range of emotions when given their child’s diagnosis. The hope is that you have found support to help you in this new journey. Isn’t it just as important to consider that your child should also be given information and support for understanding and coping with their new diagnosis? All children need to be understood and respected. At some point, people who are successful have learned who they are, and accept and use that information to help themselves become the best they can be in life. Children with an autism spectrum diagnosis should have the chance to understand, accept and appreciate their uniqueness by being given information about their diagnosis.
You may fear a number of things if you tell your child (and others) about the diagnosis. You may fear that your child will not understand, that your child may lose some of his/her options in life, that your child will become angry or depressed because they have a disability, that your child (or others) will use the disability as an excuse for why they cannot do something, or even that your child will think of themselves (or others will think of your child) as a complete failure with no hope for a positive future. These issues and others may or may not surface whether or not the child and others are told of the diagnosis. All issues can be addressed, if needed. Shouldn’t all involved, including your child, have important information since the diagnosis will affect various aspects of his or her life?
Consider the stories of many individuals with an autism spectrum diagnosis who were not told, and/or were not diagnosed until they were adults. Not understanding others or social situations for many leads to poor interactions with others and resulted in ridicule and isolation. Some adults on the autism spectrum share how they felt that they were a disappointment and failure to their families and others, but had no clue why they failed or how to do better. Over time, the result can be low self-esteem and/or self-acceptance problems among other issues. Given correct information about their diagnosis and differences, along with support, many of these individuals explain they have become successful.
Your child may know that s/he is different, but like all children at certain developmental stages, they may come to the wrong conclusion about their perceived differences. They may even wonder if they have a terminal illness and are going to die. They see doctors and therapists and go for treatments, but are not told why. Even the child or adult who does not ask and/or verbally express concern about being different may still be thinking those thoughts. Even children with autism spectrum disorders, like all children, may sense the frustration and confusion of others and make wrong assumptions about the cause of the turmoil around them.
There is no exact age or time that is correct to tell a child about their diagnosis. A child’s personality, abilities and social awareness are all factors to consider in determining when a child is ready for information about their diagnosis. If older when told, they may be extremely sensitive to any suggestion that they are different. You can look for the presence of certain signs that the child is ready for information. Some children will actually ask, “What is wrong with me?” “Why can’t I be like everybody else?,” “Why can’t I _____?,” or even “What is wrong with everyone?.” These types of questions are certainly a clear indication that they need information about their diagnosis. Some children, however, may have similar thoughts and not be able to express them well.
Some children do not get a diagnosis until they are in their teens or older. Frequently, those who are diagnosed later have had some bad experiences that can influence the decision of when to share information with them about their diagnosis. They may be very sensitive to any information that suggests they are different. On the other hand, an older child may already know about a previous diagnosis such as Attention Deficit Disorder, Conduct Disorder, and/or a mental health disorder of some kind. Because of this history with another label or diagnosis, it may be an appropriate time to share the diagnosis and some concrete information about ASD.
Many adults with an autism spectrum diagnosis express the view that children should be given some information before they hear it from someone else, and/or overhear or see information that they sense is about them. A child may believe that people do not like them and/or that they are always in trouble, but do not know why. If given a choice, waiting until a negative experience occurs to share the information is probably not the best option.
Staying positive when talking about ASD is very important. Autism spectrum disorders are complex. Everyone with a diagnosis is unique. It is important that the process of explaining an autism spectrum diagnosis to a child is individualized and meaningful to them. As you begin, it can be hard to decide what and how much information to share. If the child has asked questions, it will give you a place to start. Make sure that you understand what they are asking.
Many families have found that setting a positive tone about each family member’s uniqueness is a wonderful starting place. A positive attitude about differences can be established if you start as early as possible, and before the diagnosis is mentioned by others. Everyone is in fact unique with his or her own likes and dislikes, strengths and weaknesses, and physical characteristics. Differences are discussed in a matter of fact manner as soon as the child or others their age understand simple concrete examples of differences. With this approach, it is more likely that differences, whatever they are, can be a neutral or even fun concept. Matter of fact statements such as “Mommy has glasses and Daddy does not have glasses” or “Bobby likes to play ball and you like to read books” are examples. The ongoing use of positive concrete examples of contrasts among familiar people can make it easier to talk about other differences related to your child’s diagnosis with him or her.
Consider your child’s ability to process information and try to decide what and how to tell. For those children who have a keen interest in their diagnosis and those whose reading ability is good, there are currently a few books written by children with an autism spectrum diagnosis that may be of interest (Hall, 2001; Jackson, 2003; Krauss, 2010).
There are also many more books written by adults with an autism spectrum diagnosis. Some of these books are meant to be read by any interested persons, but many are meant to be read by others with a diagnosis of an autism spectrum disorder. Authors with an autism spectrum diagnosis are reaching out to others with a diagnosis by sharing experiences, sharing tips on life’s lessons, and helping the reader feel that they are not alone in this journey (Endow, 2012; Finch, 2012; Soraya, 2013; Willey, 2015; Zaks, 2006).
Most children may need minimal information to start. More information can be added over time. Again, be as positive as possible. Your positive attitude and the manner in which you convey the information is important. To make what you discuss with your child meaningful, you can begin by talking about any questions that s/he has asked. You may want to write down key points and tell him or her that others with this diagnosis/disability also have some of the same questions and experiences. Then you could ask if they would like to find more information by reading books, watching videos, and/or by talking with other people. If asking your child if they want information is likely to get a “no” response, you may choose to not ask. However, tell them that you will be looking for information and would like to share it with them. Let them know they can ask any question they want at any time they want.
Frequently, when individuals with an autism spectrum diagnosis have an opportunity to meet others with ASD, they find it is an eye opening and rewarding experience. Individuals with an autism spectrum diagnosis can sometimes better understand themselves and the world by interacting with others who have an autism spectrum diagnosis. Interacting with others on the autism spectrum can help individuals realize there are other people that experience the world the way they do, and that they are not the only one.
There are various possibilities for “meeting” others on the
spectrum. A few camps around the country offer various programs specifically
for those on the autism spectrum. Some agencies and organizations offer
playgroups for children and/or social activity groups for teens. There are also
Listservs and Facebook groups some hosted by individuals with an autism
spectrum diagnosis. It is important you check these online forums for safety.
Some conferences for parents and professionals offer sessions and other events
for teens and adults on the autism spectrum. Most of us can relate to an
interest in connecting with people who are like us.
Workbooks that provide a structured guide for the process of telling a child
with ASD about their diagnosis (Faherty, 2014; Vermeulen, 2012) are readily
available. The workbook format is designed to provide activities that help
organize information about an autism spectrum diagnosis as well as making the
information more child specific and concrete. The different lessons suggest how
the information is shared with your child. The child and a trusted adult
working together can complete the worksheets. In many cases, worksheets can
also be modified for different ages and functioning levels of the child who
would be using the materials.
4. Enabling circles of peer supports
Circle of Friends (CoF) is a form of Peer Mediated Intervention (PMI). PMI is defined as a treatment approach in which typically developing peers are trained to implement behavioral interventions and facilitate social skills development in special needs populations. It has been identified as an established treatment with positive outcomes for children with autism (National Autism Center, 2009). Originally implemented with preschoolers, the Circle of Friends model has been used to support individuals on the autism spectrum of all ages through the college level.
Through a Circle of Friends program, typically developing peers are taught important information about classmates with social challenges, and are invited and encouraged to befriend them. These peer mentors are provided education and awareness, strategies for connecting and supporting others who may be different, and given opportunities to socially interact on a regular basis.
Peer-based interventions are evidence-based practices that teach strategies to typically developing peers for facilitating social interactions with children on the autism spectrum. Peer-based interventions can be used to target communication skills, interpersonal skills, and play skills. The effects of these types of interventions often are beneficial for both the student with autism spectrum disorder (ASD) and the peer(s). For example, students with ASD often demonstrate improvements in social interaction skills including increased initiation and responding to peers. Peers often demonstrate increased levels of tolerance, awareness, and acceptance of differences.
Here are some suggestions for using peer supports in your school:
Peer support can serve a variety of functions for students with autism spectrum disorder in the school community. With the ever expanding and varied needs of students, peer support programs become a necessary strategy to ensure that all students with autism spectrum disorder gain maximum benefit from the school day and peers benefit as well by learning to support the varying needs of their classmates with disabilities.
Through these experiences, nondisabled peers can ultimately become better informed citizens and community members among a diverse society.
Emerging research indicates Circle of Friends programs can:
5. Empowering towards self Advocacy
Empowering the person with autism is at the core of all activities undertaken at AFA. Helping the person with autism understand the world around them, equipping them with means to communicate to the best of their abilities, helping them navigate social situations with success, leading them to independent and productive futures are all part of this process of empowerment. Equally important is the effort to help people with autism understand their rights, and be able to speak about their journeys, the triumphs and travails, and advocate for their rightful place in society.
Self-advocacy is possibly the most powerful form of advocacy. However, when one considers a condition like autism, the nature itself makes self-advocacy a daunting task. Gathering and organising one’s thoughts, being able to communicate the same in forums that necessitate understanding and coping with social rules can be extremely challenging for even a very able person with autism. That is probably why until a few years back, there were just a handful of autistic self-advocates across the world. The situation has changed in the recent past, where we have seen far more individuals with autism, primarily from the more developed nations, speak about their experiences and be vocal about their needs and rights.
In India and South Asia, self-advocacy amongst people with autism is still at a very nascent stage. Apart from the inherent difficulties that people with autism face to become self-advocates, the general stigma that our society attaches to disabilities is an added deterrent to self-advocacy which is often discouraged by families.
How To Teach Your Family Member Self-Advocacy Skills
It is never too early to begin teaching your children the importance of self-advocacy, and the skills necessary to effectively self-advocate. Once of the first steps to teaching children self-advocacy skills is to teach your children about self-determination – the knowledge about one’s strengths and limitations. By teaching your child self-determination, your child learns that he or she is strong, capable, successful, and, ultimately, responsible for her or her own goals, accomplishments and setbacks.
In addition to teaching your child self-determination, parents looking to build self-advocacy skills should provide and promote decision-making activities for their children throughout the day; i.e. timing of events, personal choices, etc. Autism Speaks recommends teaching these five decision-making steps to your children when focusing on building self-advocacy skills:
Another important strategy for teaching your child to self-advocate is to help your child understand his or her rights and responsibilities as an individual with disability. It is important that he or she is aware of what is acceptable and not acceptable in terms of treatment, access, services, etc. It is also important to teach your child how to verbalize and communicate his or her concerns and ask for help in the event of unfair treatment, or violations of their human rights.
Some individuals with autism can verbally communicate their goals and desires while others may have difficulties with communication skills. As your family member with autism ages, he will need to learn how to assess problems, speak up and ask for what he needs, know his rights and how to negotiate.
Part of this may involve learning if or when to disclose his diagnosis. If he has the cognitive ability to understand, talk to him about autism. The more comfortable and open you are with the diagnosis, the more comfortable your child will be. Don’t downplay the challenges, but focus on his strengths, and assure your child that the entire family is behind him to offer love and support.
The skills you will use to advocate for your child now will be the same ones you will need to teach to your child as he grows so that he can become his own advocate as much as he is able to. He will need to communicate his needs and desires – from simple things such as telling others what he wants to eat or that he is in pain, to handling a range of real life situations that will require more sophisticated skills, such as how to ask a noisy roommate to be quieter.
It helps to role play different scenarios. You could ask him, “What could you do if your friend’s radio is too loud?” Teach him to identify options and desired outcomes; help him formulate such appropriate responses as “I’m sensitive to loud noise and your music is hurting my ears, could you please turn down the radio?” Your goal is to give him the skills that will someday enable him to advocate for his own needs to the best of his ability, in a work, community, or residential environment.
You will also find it helpful to reach out to adults with autism to learn about self-advocacy. Read their blogs; subscribe to their feeds on Facebook for important and unique insights only they can provide. If your child is cognitively able, he will need to know how to talk about his autism and how/if to disclose his diagnosis to others. Help him identify times and situations in his life where he can use these skills. The better your child learns to express himself and communicate with the people around him, the better he will someday be able to advocate for himself, cope with sensory problems and anxiety, and navigate the world outside the family.
Learning these skills is a lifelong process, and your child will do best when everyone involved works to give him as much independence, self-advocacy and negotiating skills as possible. Parents/guardians are in the best position to help children develop these skills. Model self-advocacy, and trust that as you find your voice, you will be able to help your child find his. The skills you teach him today will empower him for the rest of his life.