June 2006
Hello,
Although we can not tell you what you should do, we can certainly make a number of suggestions for you to explore regarding treatment, programs and services for you or your family member(s) with an Autism Spectrum Disorder (ASD).
Saskatchewan Families for Effective Autism Treatment (SASKFEAT) is the provincial autism society in Saskatchewan, which represents Saskatchewan to Autism Society Canada. We try very hard to both inform and stay informed about autism services in various areas of the province. You can learn more about SASKFEAT at its website, www.SASKFEAT.com .
Diagnosis
If you are in the process of seeking a formal diagnosis for yourself or a family member, it is helpful to understand more about Autism Spectrum Disorders and how they are diagnosed. See the Autism Society Canada website’s section on Understanding ASD’s http://www.autismsocietycanada.ca/understanding_autism/overview/index_e.html and their section on resources for screening, diagnosis and assessment http://www.autismsocietycanada.ca/resources_for_professionals/resources/index_e.html . In Saskatchewan, diagnosis is usually initiated by the family physician with a referral to a child psychiatrist (accessed through your health district’s Mental Health Child and Youth Services) or to a developmental pediatrician <with special interest in autism> (available in Regina <Dr. Susan Petryk> and Saskatoon <Dr. Karen Streilein> through the health district), or to the Childrens’ Program at Regina’s Wascana Rehabilitation Centre or Saskatoon’s Kinsmen’s Centre. Some other pediatricians and psychologists also do ASD diagnosis. A few Saskatchewan diagnosticians have specialized training in ASD diagnosis (see http://www.umaccweb.com/diagnostic_tools/index.html ). All aspects of the challenges in autism should be assessed, including language, physical, biomedical, genetic, learning and behavior issues. After a diagnosis, more detailed assessments of strengths and challenges should be organized. At this time, we are only aware of these being available through the Regina Autism Resource Centre for their clients, or through private services in Alberta. Diagnosis for adults with an ASD is usually organized with a referral from a family physician to a psychiatrist or clinical psychologist through your health district’s Mental Health Services.
Autism Treatment
In Saskatchewan, there is only one comprehensive autism treatment program, and it is run by the Children’s Kinsmen Centre in Saskatoon. It only has space for 6 children each year. However, some aspects of treatment may be available in your region, either in the public system or through private professionals. This might include some educational programs, speech therapy for communication issues, and occupational therapy for the common physical and sensory challenges that many people with ASD experience. Obtaining medical assistance for the many medically unusual challenges that are so common in autism is very difficult. There are developmental pediatricians in Regina and Saskatoon, but we have no physicians who have some of the specialized biomedical training that has proven to be important to many people with ASD. There are some private services which include some aspects of treatment. Contact SASKFEAT for more information about which treatment services are known to be available in your region.
SASKATCHEWAN FAMILIES FOR EFFECTIVE AUTISM TREATMENT INC.
BOX 2545, TISDALE, SK. S0E1T0 PHONE:(306) 862-4768 FAX:(306) 862-3899
WWW.SASKFEAT.COM; SASKFEAT@HOTMAIL.COM
Applied Behavior Analysis
With regard to autism treatment, the most well known methodology is Applied Behavior Analysis (ABA), from which Intensive Behavioral Intervention (IBI) has been developed. ABA/IBI has the largest body of scientific evidence supporting it as an effective treatment for autism. It is a system of teaching the skills that are challenging for a person with autism to acquire. However, there are no publicly funded ABA/IBI autism treatment programs in Saskatchewan. Even if you can not privately afford a professional consultant and therapists, you can purchase parent training manuals and do a great deal of work on your own. The use of professional consultants and therapists is highly recommended, but families can accomplish a great deal themselves with accurate guidance. Several parent manuals have been written, such as “A Work in Progress – Behavior Management Strategies and a Curriculum for Intensive Behavioral Treatment of Autism” by Ron Leaf and John McEachin. You can obtain such books through Parentbooks in Toronto www.parentbooks.ca . There is a terrific e-mail discussion group of families using ABA called the “ME LIST”. It is tremendously helpful to be able to talk to other families using the same methods, and who may be going through the same challenges. For more information about ABA , related resources and private consultants, you can check the SASKFEAT website www.saskfeat.com , ABA Educational Resources http://abaresources.com/resources.htm , ABA Resources http://rsaffran.tripod.com/aba.html , and the Cambridge Centre for Behavioral Studies http://www.behavior.org/ .
Other Treatment Methodologies
There are other treatment methodologies, several of which have been shown to also be effective. However, the body of published evidence supporting their effectiveness is much smaller, they do not have published parent manuals, there are no international discussion groups, and there is no system of accreditation for professionals in these methodologies. It is recommended that families look most seriously at treatment methodologies that are endorsed in published autism best practices documents. You can look at a collection of Autism Best Practices Documents on the Autism Society Canada website at http://www.autismsocietycanada.ca/resources_for_professionals/best_practices/index_e.html and at a collection of information about various treatments at http://www.autismsocietycanada.ca/approaches_to_treatment/overview/index_e.html . People certainly have the right to exercise choice, and to determine which treatments and programs they feel will be the most benefit for their family members with an Autism Spectrum Disorder.
Complementary or Alternative Treatments
There are a number of complementary or alternative treatments that treat some symptoms or aspects of Autism Spectrum Disorders. Some have a small body of published research supporting their efficacy, and many do not have any scientific validation. Some present little or no danger to try, and others have significant risks attached to them. It is very important to consider published research about the complementary or alternative treatment you are considering. SASKFEAT is certainly open to inquiries about treatments, and we will try to assist you in seeing if there is evidence to support its consideration, speaking with another family that has some experience in that area, and identifying professionals who provide such services.
Support and Information
Even if you can not access a publicly funded autism treatment program, this does not mean that there is nothing you can do. First of all, link up with other families to get more information. Talk to local and provincial people associated with SASKFEAT (www.saskfeat.com), and let us add you to our provincial e-mail list for autism news, information and advocacy. Other parents and parent-run autism and disability organizations in your area will also have information on possible services near you. There are regional autism service organizations in Regina (Regina Autism Resource Centre http://www.autismresourcecentre.com/ ) and Saskatoon (Autism Services http://www.autismservices.ca/ ) and other disability organizations that may be able to provide some ideas about services (e.g. Moose Jaw Asperger’s Support Network; Saskatchewan Association for Community Living http://www.sacl.org/ ; Saskatchewan Family Network <contact SACL>). You are not alone, and other people may be able to provide support and information as well as share their experiences. Check the SASKFEAT website for links to known organizations and groups that may be of assistance.
Communication/Speech Therapy
Communication assistance is most often provided by speech therapists. If your child is of pre-school age and is not involved in a program organized by your Board of Education, you can request the services of a speech therapist from your health district. If your child is school-age, or in a school-based program, seek speech therapy through your school or school board. Adults can access speech therapy through their health district. Some people with autism do not develop functional and fluent spoken communication, but they can often develop functional communication using alternative and augmentative communication systems. Examples would include the Picture Exchange Communication System (PECS http://www.pecs.com/ ) (which is often taught using IBI methodology), or a type pad/picture board system (Overboard http://www.gusinc.com/Overboard/index.html ; Boardmaker http://www.mayer-johnson.com/ and lots of resources at Beyond Autism http://www.members.tripod.com/trainland/pecs.htm ) . The issue here is to help the person acquire a functional communication system so that they can communicate and so that learning can expand. A speech development program that some people have found helpful in autism is the Hanen Program www.hanen.org , centered in Toronto. You need to find a speech and language pathologist who has experience with people, and especially children, with limited communication who can work on increasing verbal language skills, and at the same time, organize a functional alternative/augmentative communication system. Sign language is sometimes suggested, but because children with autism have serious challenges with imitating, sign language is most often not the first choice for an alternate communication system. If you are considering sign language, think about using Signed English rather than American Sign Language (ASL). ASL has a completely different grammar and structure which means that verbal people can not sign and talk at the same time. Signed English lets you speak normally and sign while speaking, reinforcing regular verbal communication. However, the PECS System is the most used alternate communication system for people with autism with limited verbal abilities. In most cases in Saskatchewan, access to publicly funded speech therapy is either not possible or very restricted and difficult to obtain. The Saskatchewan Association of Speech-Language Pathologists and Audiologists has a list of private practice speech therapists by region at http://www.saslpa.ca/private_practice_slp_individuals.html
Occupational Therapy
People with autism almost always have significant motor skills issues, including problems with imitation. This usually requires the assistance of an occupational or physical therapist (OT or PT). Your doctor may be able to refer child to a pediatric OT or PT for assistance with these autism related challenges. There are some Occupational Therapists who have specialized training in sensory issues, called Sensory Integration. These OT’s are particularly helpful to children with autism, as autism almost always involves unusual ways of perceiving and responding to sensory information. Many people have found that when the sensory needs of autism are met or accommodated, their learning is more focused, and they make much more progress and are much better able to cope with day to day situations. Often, addressing sensory issues is a very long process. A terrific website to learn more about Sensory Integration Dysfunction is http://www.geocities.com/~kasmom/sid.html . Please check the SASKFEAT website for contact information for the private OT’s we are aware of with SI experience. In some school boards, there may be an OT who will work with students where physical, motor and sensory issues affect their learning. Some regions have a shared services OT who works both with people referred from the health district and the school boards. In most cases, access to a publicly funded OT is very difficult or often not possible.
Medical Issues
Quite often, people with autism have challenges with various body systems that mean that they have metabolic, endocrine, immune and digestive systems that are not functioning in a typical manner. There is a growing body of scientific evidence that people with autism very often have medical physical body issues that are unusual and sometimes challenging to help. If you are interested in this, you might want to read the Defeat Autism Now (DAN) page http://www.autism.com/ari/dan/contents.html at the Autism Research Institute website. Many families begin by trying their child on a gluten, casein and soy free diet, and look at other ways to reduce the medical issues that often accompany autism. You can learn more about this at the Autism Network for Dietary Intervention http://www.autismndi.com/ . Medical issues should involve your family’s medical professionals.
Education
Saskatchewan Learning provides additional or incremental funding to local school boards to help meet the needs of special needs students. First, the student must be designated disabled by your local Board and approved by Saskatchewan Learning Regional Superintendent of Children’s Services. You can find that person in the Directory of School Division Officials http://www.learning.gov.sk.ca/branches/ed_finance/pdf/School_Division_Directory2006.pdf . The amount of funding depends of the classification of the severity of the disability – see the Education Regulations sec. 48, 49(c) e)(f)(h) or 49 (a) or (b) http://www.qp.gov.sk.ca/documents/English/Regulations/Regulations/E0-1R1.pdf
and the Children’s Services & Programs: Special Education and Community Education – Funding and Documentation 2005 – 2006: A Guide for School Divisions p. 6 to 9 http://www.learning.gov.sk.ca/branches/curr/special_ed/docs/funding/Funding%20Manual%20for%20SD%202005-2006%20.pdf . Services must be in accordance with the sections of the Education Act dealing with special needs sec. 178(1), 186 (2) (especially part (b) (iii)), and (7)) http://www.qp.gov.sk.ca/documents/English/Statutes/Statutes/E0-2.pdf , and the Education Regulations sec. 48 (b)(c), 49 (h), and 52(1)(a)(c) (see link above), as well as the Children's Services Policy Framework (Saskatchewan Learning’s special needs policy manual) http://www.sasked.gov.sk.ca/branches/curr/special_ed/docs/misc/plcyfrmwrk02.pdf and the Funding and Documentation Guide (see link above). All special needs students must have what is referred to an Individual Education Plan (IEP) everywhere outside Saskatchewan, but which is called a Personal Program Plan (PPP) in our province, as explained in the Children’s Services Policy Framework sec. 4.1, although each board of education will have their own forms and procedures for developing the PPP. For more information on IEP’s for students with ASD, see Autism Society Canada’s IEP Resources section at http://www.autismsocietycanada.ca/approaches_to_treatment/resources/index_e.html#iep . It is possible to provide education for a student with ASD in a home environment, and still access the incremental funding and associated special services. See the Children’s Services Policy Framework sec 7.8 Home-Based Education for Students with Disabilities and the Funding and Documentation Guide p. 9 Home-Based Education for Students with Disabilities. Some locations have private programs (such as Regina’s SCEP Centre http://www.enablelink.org/include/disability_organization.php?pid=&cid=&subid=&aid=3561&atype= ) which sometimes provide services for students with ASD, with services purchased by your local board of education. If you are looking for some additional Saskatchewan resources to assist your child’s education, you could check Saskatchewan Learning’s online courses at http://www.centralischool.ca/wblrd/web_resources.html . Some families are satisfied with the education programming organized for their children with autism, but many families find that education issues and services organized through education are extremely challenging. Currently, most of the needs for students with ASD in Saskatchewan are expected to be met through education services. This is often not successful as teachers are not provided with the type and level of training that published research indicates is necessary for effective treatment and the most successful learning possible for students with ASD.
Online Discussion Groups
Connecting with other families is very important, and the internet is a terrific way to do that. There is a great autism e-mail discussion list that includes all aspects of autism from St. John’s University. You can get information about it at http://hunter.apana.org.au/~cas/autismlist/autintro.html (look at the FAQ). For a list of autism online discussion groups, see http://www.autism-resources.com/links/forums.html . Families in Saskatchewan can connect through the “On the Spectrum” list. For more information, you can e-mail the list owner in Regina at spectrum@accesscomm.ca
Conferences
You can also attend seminars and conferences on autism. Autism Society Canada’s website has a conferences page which is updated every few months. To learn more, go to http://www.autismsocietycanada.ca/upcoming_events/canadian/index.html
Current Information
Staying informed about current information regarding autism is important. The easiest way to do this is to subscribe to the daily autism newsletter called the Schafer Autism Report. It includes research, treatment, advocacy, news and a monthly calendar of upcoming autism seminars, conferences and events. It has been free, but there is now a small charge for those who can afford it, although it remains free for those people who can not afford to subscribe. Go to http://www.sarnet.org/ for information and how to subscribe.
Child Care
Saskatchewan’s education department, called Saskatchewan Learning, has some funding to assist with supporting special needs children in child care settings. For more information, see http://www.sasked.gov.sk.ca/branches/elcc/Child_Day_Care_Inclusion_Program.shtml
Respite and Other Services from Community Living Division
The former social services department, now called Community Resources, has a section called Community Living Division which sometimes can provide some forms of assistance including a respite subsidy (currently has a number of restrictions which often make this not accessible for people with ASD). For more information, see http://www.dcre.gov.sk.ca/services/peoplewdis/CommLivServ.html . For information on the Saskatchewan Rental Housing Supplement, see http://www.dcre.gov.sk.ca/services/peoplewdis/index.html . Some health districts also have respite services, so you should speak with your health district’s client representative.
Early Childhood Intervention Program
You can refer your family to ECIP for the possibility of having a home-based visiting program of a few hours each month. ECIP is now administered by Saskatchewan Learning, with ECIP offices in many regions. For more information, see http://www.agr.gov.sk.ca/apps/human_serv/structure/display.asp?id=1328
Cognitive Disabilities Strategy
Saskatchewan Health has developed a strategy to help people with cognitive disabilities. However, it is only for severe cases, and is now means tested (only available if your income is low enough). To read the document describing the strategy, see http://www.health.gov.sk.ca/fs_090205_cognitive_disabilities.htm . To find out how to apply, talk to your health district to obtain the forms and requirements for your region.
Disability Tax Credit
The federal government enables some people with disabilities to be eligible for a Disability Tax Credit on their income tax. For related documents, see IT519R2-CONSOLID - Medical Expense and Disability Tax Credits and Attendant Care Expense Deduction and T2201 - Disability Tax Credit Certificate.
Challenges
For many people affected by autism in their family, challenges accessing diagnosis, treatment, education and other necessary services seem to be far too common. We would really appreciate you sending SASKFEAT an e-mail if you have such challenges. This lets us know what Saskatchewan people are experiencing, gives us an opportunity to possibly suggest some options to you, and allows us to speak on your behalf when we communicate with government officials about autism related services. You may also wish to advise the Children’s Advocate http://www.saskcao.ca/ about your situation (if a child is involved). Although he can not get directly involved in education matters, the Advocate’s office does appreciate being kept informed about issues related to children, and especially about children with health and disability issues. You can also notify the Saskatchewan Office of Disability Issues http://www.gov.sk.ca/odi/ about challenges. They collect information about challenges experienced by people with disabilities. Contacting your MLA is a good idea, as is sending your concerns to Ministers of Health and Education. You can find contact information about your provincial politicians at http://www.legassembly.sk.ca/members/default.htm. Our Members of Parliament in Ottawa also need to be kept informed about the challenges that Saskatchewan people experience. Contact information for MP’s can be found at http://webinfo.parl.gc.ca/MembersOfParliament/MainMPsCompleteList.aspx?TimePeriod=Current&Language=E . The Senate of Canada has called for an inquiry into autism treatment and service funding, and has asked the Standing Senate Committee on Social Affairs, Science and Technology to investigate and report on this issue. Contact information for our province’s Senators can be found at http://www.parl.gc.ca/common/senmemb/senate/isenator.asp?sortord=P&Language=E
We hope this is helpful to you and your family. You are not alone, and we do understand, as an organization created by families, how you feel. Do not be afraid to be a squeaky wheel in order to obtain services for yourself or your family members. Quiet wheels are far too often relegated to the pools of inattention. Speak up for yourself and for your family members with an Autism Spectrum Disorder, and don’t be afraid to contact SASKFEAT for assistance. While we can’t make any promises about solving your personal situations, we can assure you that we will try to find ideas and options for you to consider. SASKFEAT will continue to speak up on behalf of the provincial autism community to seek better treatment, services and accommodations to enable people with Autism Spectrum Disorders and their families to reach their potential.
Regards,
SASKFEAT
