Tuesday, June 25, 2013
In my therapeutic work with over 100 autistic and developmentally different persons in the Scranton/Wilkes Barre area of Northeast Pennsylvania, there are some core principles I have developed. I have been a dedicated advocate for autistic rights and have developed the International Autistic Empowerment Center to help persons and their families through relational/existential approaches to be able to develop skills to navigate through the mainstream. In addition, I have supported assisted with educational advocacy. 1. Presume intellect: Because a person is non-verbal or struggles in communication does not mean they are not intelligent nor have nothing to say. We must explore and utilize the strengths and passions of the person. 2. Behavior is communication: We may be making a grave mistake when we simply seek to shut down or suppress with powerful psychiatric drugs what we judge to be ‘unwanted’ behaviors. Behaviors, even those one may deem ‘unwanted’ may be for some the only means to convey their needs or distress. Related Articles 3. Self-Advocacy: If we wish to understand autism, we must be willing to enter their world, not force them to enter our own. We must be willing to validate self-advocates and seek knowledge about the autistic mode of being from those who actually live it each day. 4. Relationship: To help autistic persons forge emotional connections, navigate through the mainstream, and learn new skills, the key is relationship. We must be willing to forge a bond with the person, to truly seek to understand their experience, their world, how they find meaning, to know them as a fellow human being. Once we forge relationship, we can create a common healing ground 5. Respect: It is necessary for respect to exist and this means as well that we do nothing to force, coerce, or manipulate the person. We regard them as a person worthy of dignity. Our role is to advocate and support, not seek to alter the person into something they are not nor need be I share this piece below as a reflection of how we should interact with autistic and developmentally different persons, how we should understand and support. Do not see my disability as the problem. Recognize that my disability is an attribute. Do not see my disability as a deficit. It is you who see me as deviant and helpless. Do not try to fix me because I am not broken. Support me. I can make my contribution to the community in my own way. Do not see me as your client. I am your fellow citizen. See me as your neighbor. Remember, none of us can be self-sufficient. Do not try to modify my behavior. Be still and listen. What you define as inappropriate may be my attempt to communicate with you in the only way I can. Do not try to change me. You have no right. Help me to learn what I want to know. Do not hide your uncertainty behind 'professional' distance. Be a person who listens and does not take my struggle away from me by trying to make it all better. Do not use theories and strategies on me. Be with me. And when we struggle with each other, Let that give rise to self-reflection. Do not try to control me. I have a right to my power as a person. What you call noncompliance or manipulation may actually be the only way I can exert some control over my life. Do not teach me to be obedient, submissive, and polite. I need to feel entitled to say 'no' if I am to protect myself. Do not be charitable towards me. Be my ally as I fight against those who exploit me for their own gratification. Do not try to be my friend. I deserve more than that. Get to know me. We may become friends. Do not help me, even if it does make you feel good. Ask me if I need your help. Let me show you how you can best assist me. Do not admire me. A desire to live a full life does not warrant adoration. Respect me, for respect presumes equity. Do not tell, teach, and lead. Listen, support, and follow. Do not work on me. Work with me.
Thursday, June 13, 2013
In my fourteen years of journeying with autistic and developmentally different persons, I have always presumed intellect and known that they possess inherent strengths and passions. I have seen two very divergent attitudes towards autism, one which seeks to eradicate autism and is willing to implement any strategy, even by force and coercion to seek to alter the person to fit into the mainstream. I find this a degrading and inhumane approach but it is often a core attitude present in behavioralist approaches. Wanting to embrace the autistic person, to understand their experience, to support their struggle, and to help them navigate through the mainstream, I developed the Northeastern Pennsylvania Regional Autism Acceptance Project. The Northeastern Pennsylvania Regional Autism Acceptance is unique in that it provides consultation based on a relational and existential approach as well as educational advocacy. The goal is to help the person find meaning, and to be able to forge emotional connections. This is accomplished by respectfully entering the world of the autistic person and helping them gain understanding of the world of others. Though referred to as the Northeast Pennsylvania Regional Autism Acceptance Project, this work has spread beyond Pennsylvania and consultation has been provided both across the nation and abroad. It is my hope that through this Project, people will not only develop greater awareness of autism, but a greater acceptance, a willingness to understand, to see autism as a mode of being rather than a 'disease' and to see autistic persons as persons of value and in need of dignity and respect.
THE INVENTION OF ILLNESS Northeast Pennsylvania Autism Acceptance Project/International Center for Humane Psychiatry
The Invention of 'Illness' We must depart from a medical model which fails to truly understand experience. Published on June 8, 2013 by Dan L. Edmunds, Ed.D., B.C.S.A. in Extreme States of Mind I share this scenario because sadly it is becoming a frightening reality: A child is considered overly active and has behavioral issues at school. The school staff may recommend psychiatric intervention and even go as far as to say that medication is necessary, even designating which one. The child sees the psychiatrist for a brief session- it is not thoroughly examined if the child has any physical conditions, allergies, etc. Immediately the child is labeled and given a dose of psychostimulant. The child develops side effects such as weight loss, insomnia, and possible tics. In order to counteract the insomnia, a new drug such as Klonidine is added. The child develops emotional lability and has crying episodes and manic behaviors. The psychiatrist is seen again for a brief time, and on this visit its determined that 'bipolar is emerging'. The child is then given Depakote or some other mood stabilizer. The child now must receive regular blood tests to insure that liver toxicity does not arise. The child is not overly active, he is quite docile, so it is reported that improvement has occurred. However, with the combination of drugs, he develops some psychotic like symptoms where he feels something is crawling on him and has some hallucinations. The psychiatrist is consulted again, and its determined that bipolar with psychotic features exists or maybe even the possibility of childhood schizophrenia. The child is then given Risperdal or another neuroleptic. Strangely, the child begins developing unusual jaw movements and muscle rigidity. The parents are concerned and ask the psychiatrist if this is medication related and if the child is overmedicated. The psychiatrist brushes off the question and prescribes Cogentin (used for Parkinson's) to alleviate the neurological problems caused by the development of tardive dyskinesia but fails to remove the offending agent. The child's behavior becomes more unusual and bizarre leading to hospitalization where medications are raised and adjusted and new ones added. Then the recommendation comes from the psychiatrist that it would be better for the child to be moved to a residential treatment facility. While in the residential facility, the child is frequently restrained and is injured, he is placed with other children with serious emotional and behavioral distress. He is discharged home having absorbed a lot of new negative behaviors from peers, lacking knowledge of the outside world, and with few skills. So, once the child nears adulthood, it is recommended that he live in a group home where he can be cared for and the psychiatric regiment can be maintained. The child has been 'treated.' Related Articles ''I don't think we're supposed to be talking about this...'' Understanding Karma: It's Relative, Not Just 'Good' and 'Bad' An interview with Erin Munroe: Almost everything you should know about 'stepparenting' and 'friendship' Kristen Stewart's afraid she'll be assassinated; is it the 'Twilight' of her mental health? If I'd 'a Known You Were Coming, I'd 'a Baked a Cake! Find a Therapist Search for a mental health professional near you. Find Local: Acupuncturists Chiropractors Massage Therapists Dentists and more! What is the solution to resolving the insanity of the mental health system? First, we must stop looking through the eyes of a medical model, where we see children as broken and disordered and attempts are made to attributing their behaviors and emotions solely to a malfunctioning brain. There is no evidence supporting the psychopathology of a number of disorders. The linkage between the pharmaceutical companies and psychiatry needs to be evaluated as well as the information that is disseminated via the research and materials provided by pharmaceutical company money. The goal should be to examine the underlying factors of a child's behavior, looking at the child with dignity and respect, and seeing the child as one in conflict rather than a person who is disordered. Such stigmatization remains indefinitely, and labels can often become a self fulfilling prophecy and will follow our children for years to come and shape the way that they view themselves and also the way others view them, particularly the educational system. We cannot look to solely the most cost effective solution when our children's lives are at stake. Indeed, providing a prescription may control aspects of behavior and be though to have a 'therapeutic effect' but never gets to the root cause, and whereas it is far less expensive to medicate than to provide ongoing psychotherapy, it is appropriate and compassionate counsel that will make the difference. Second, the realm of psychotherapy must return to its original roots. The word psychotherapy literally means the healing of the soul. We must return the soul to therapy, encouraging therapists to instill within themselves the principles of compassion and empathy that are crucial for any therapeutic relationship to blossom forth. Therapists need to be compassionate and creative, and willing to give additional time and effort to see that a child's needs are met and to also provide community linkages and ongoing support within their environment and to encourage the least restrictive setting for our children. We need to hear our children's voices, even if they speak to us in metaphorical means. We need to listen to the behavior of children as possibly their only way to communicate to us their situations of distress and the impact of living in a disordered world. The coercion of parents and families into forced 'treatments' needs to be eliminated. Third, the educational system must be willing to accommodate to meet the various learning styles of children and not seek to place them in a box of rote learning or limit them to one particular style. Some children may falter in a visual setting and need a hands on approach, whereas others may need other methods of encouraging their effective learning. We must return time, attention, and individuality to the classroom. Fourth, parents need to continue to take an active role in the lives of their children, providing ongoing guidance, validating emotions and not taking a dismissive, disapproving, or hands off approach. Rather, parents must be involved in helping the children develop their own sense of being, and being able to assess themselves. Parents need to avoid nagging their children and becoming entrapped in the propaganda that their children are disordered and need drugs to function. Fifth, our society must change in it attitudes. If we worked towards ending poverty and alleviating social injustice, the rates of emotional distress would definitely decline. We are a society where we try to find our answers to ailments within a simple pill. We are a society that has unfortunately lost sight for the welfare of our children. We are a society where we are prosperous, yet greed often blinds us. Such disorders such as ADHD can be looked upon as a social construct. 90% of Ritalin sales are in the US. This tells us that there is something to be examined within our society that needs correction. Somewhere along the line we have failed our children. This is not to lay blame on any particular individual but to understand that our children are in crisis, and it is up to all of us to take the steps for change. We need to rely less on psychiatry and its devices to solve our problems and more on what we can do within ourselves- to take a holistic approach, to understand the child as a whole person- physical, emotional, and spiritual, and to examine in each of these areas where there may be difficulties that can be alleviated. We need to rely less on others dictating the course of our own and our children's lives and develop workable plan within our own family structure. Nothing will ever be perfect, but even in the most serious disturbances, love and compassion can heal much. We must realize that in some situations within society and within our own lives, we may never be able to evoke complete change. This is the cause of much distress, not problems themselves but how we respond to them. To battle those things beyond our control can lead us to emotional distress, but if we seek live as principled individuals, we can make a difference