Marianna is a Chartered Clinical Psychologist specialising in the field of Autism Spectrum and neurodiversity. For over twenty years, Marianna has dedicated her work to promoting the psychological well-being of people on the Autism Spectrum and improving understanding of ASC as an international trainer in diagnostics of ASC, lecturer, writer and therapist.
Marianna started her career working for the National Autistic Society, supporting young adults with ASD in accessing further education. She then worked at the Institute of Psychiatry and the Maudsley Hospital as a Research Psychologist on the Molecular Genetic Study of Autism as well as on the longitudinal study following up children adopted from Romania, who experienced severe deprivation in early development.
For ten years, Marianna managed psychology provision at the National Centre for High Functioning Autism at the Great Ormond Street Hospital for children. Together with colleagues from the Institute of Child Health, she conducted research into how environmental modifications in schools can lead to improved outcomes for children with ASC. She was part of the team who developed the STEP-ASD (Systemic Transition Programme for ASD), a research-evaluated intervention supporting children with Autism Spectrum in mainstream schools, and co-authored a book on supporting children during the transition into secondary school. She developed programs to support children, young people and their families after receiving a diagnosis (PEGASUS), published in peer-reviewed journals including JCPP and PEGASUS is now used in a range of services across the UK. She also set up and continue to provide training in diagnostic assessment of Autism Spectrum (ADOS2 courses), which attracts professionals from all over the world.
In 2017, Marianna was approached to set up the first ASD/LD module of the CYP IAPT program, where she works to date as a Senior Clinical Tutor. Marianna is the founder and director of Autism Spectrum Direction, a social enterprise that provides training courses internationally and invests proceeds from these to support autistic community through therapeutic and assessment services. The main focus of her career has been inspiring people to continuously strive to create more inclusive environments for everyone on the neuro-spectrum and helping children and young people with neurodiversity to achieve to their potential.
Autism Society (http://www.autism-society.org) is a wonderful internet resource for individuals searching for information regarding Autism. The website is useful for individuals on the spectrum, family members, professionals, and individuals interested in advocacy. The site easily navigates users to their subject of interest whether it is early symptoms of Autism, treatment options, coping tools for families, and even up to date research projects, among many other topics. Once the user has found their subject of interest, the Autism Society site does a nice job at keeping information succinct and around 1 page in length and generally provides an outside link to more in depth information at another reputable site. This helps at not overwhelming the user while providing the opportunity to easily search for more information. The website also provides a Spanish translation feature. Unfortunately the information translated is not as in depth as the English information, however the information translated into Spanish is still very useful and Autism Society provides links to other internet Spanish language Autism resources.
My favorite feature of this website is the “Resources near you” link that follows the user as they navigate the pages. No matter where the user is within the site, they can click on this search tool and get the contact information for their local area Autism Society chapter. Another unique and interesting aspect of this website is their information regarding “Sensory Friendly Films”. I had never even heard of this opportunity and the Autism Society site gives information on upcoming films and locations. “Mars Needs Moms” will be starting March 12th! For more information follow this link: http://www.autism-society.org/get-involved/events/sensory-friendly-films/#theatres.
The one area of the site that I was a little wary of was the research section. Despite stating in other areas on the website that there is no known cause of Autism, the FAQ section under the research tab leads the user to believe that environmental toxins (especially metals such as Mercury) are probable causes. I found it strange that, over the majority of the site, they made very neutral comments and attempts to only state known facts but had no qualms about taking a definitive stance on the cause of Autism within their research section.
All in all, I found the Autism Society site to be a wonderful resource for people looking for general information on Autism or advocacy opportunities.
When researching the resources available to parents of children with autism, I felt it was fitting to examine a site created for parents by parents. Autism Key (http://www.autismkey.com) is a website designed and managed by five individuals, all of whom are parents to children on the autism spectrum. Each of these parents was, at one time or another, faced with a diagnosis of autism and with the daunting task of understanding what exactly that meant. As mentioned in the site’s mission statement, the creators felt that one of the most frightening factors in their child’s diagnosis was the lack of parent-friendly information available. In response to their own frustration, they launched Autism Key in 2005 as a resource for other parents in their position.
Given that this is a resources created by parents, the language and vocabulary used throughout the site is parent-friendly and less clinical than many other autism-related websites. It offers a simple breakdown of Pervasive Developmental Disorders and a basic description of autism that is suitable for newcomers. Although Autism Key does mention several clinical terms (echolalia, hyperlexia, etc.), it also offers clear definitions of them. Particularly impressive is that the creators have posted related videos for many of these terms, giving parents a visual example of what some of these behaviors/conditions might look like. For many parents who are new to the world of autism and to the complicated vocabulary that comes with it, simple definitions and video models can make this world a little less foreign.
In addition to providing introductory information, Autism Key also attempts to link parents with other resources. Listed on the site are numerous related organizations, categorized according to state. As of January 2011, the creators have also built a page where articles on the topic of autism may be posted. The articles span various autism-related topics and appear to be updated frequently, the most recent posting just yesterday. Also new last month is Autism Key’s Message Board page. Upon entering this page, parents are given a choice of nearly thirty message boards where they can read or post. The discussion boards are categorized under general discussion, disorders and conditions, or treatments and therapies, with each section divided into more specific topics. Here, parents are able to find a discussion board, or several, that best meet their needs. This feature also gives parents the opportunity to connect with others and to develop their own support networks.
Overall, I found Autism Keys to be a valuable resource to parents of children with autism. Although one potential flaw in this website is that none of the creators/editors are professionals in the field, the creators are very honest about their lack of formal autism-related education. The website is marketed as one created by parents and each of the creators outlines his/her experience, or lack thereof. While some visitors may view their lack of formal education as a flaw in the site, others may value that their perspective is as parents rather than professionals. In either case, I found that this information was readily available for visitors to consider as they choose. All in all, I feel that this site is a helpful bank of information and a great starting point for any parent newly faced with an autism diagnosis.
Jennie!
Thank you for sharing with us the great features of the Autism Society website. I looked at it and it looks great!
I really like their facts and statistics section. They provide very interesting numbers. I also liked their ‘Resources near You’ feature.
I did however, had a hard time trying to find the FAQ under the research tab. I actually did not find it. I noticed that the website is very clean and the contrast is great. I also liked that the information is kept within one page (mainly). But I also noticed multiple tabs and sections in all pages that seem to be crowding the main information. For example, there is a large red tab ‘donate’ that goes along with you to all pages, there is also large blue tab ‘become a member’ that also takes a ride with you when viewing all the pages. There is also on the right side a green tab ‘connect with us’ that’s also in all the pages. I would assume that these features have allowed the Autism Society to attract members, donations, and maintain contact. Which I am sure is an important goal for an online website to grow and get known. Great resource! Thank you for sharing!
Jennie,
I completely agree about your comment regarding the Autism Society website. I think the website is a great resource for families and professionals. The site has great visuals, is easy to navigate and provides useful information for both parents and professionals. I loved the section “take action” since it empowers families to contact their representatives.
Direct link to New York Metro chapter of the National Autism Association – http://www.naanyc.org/
National Autism Association – http://nationalautismassociation.org/
My goal was to find objective information for parents of a newly diagnosed child with Autism, along with local resources that would provide additional support. I used the keywords “autism,” “parent,” and “New York” to discover an unbiased Website, that was not likely to be influenced by drug companies, and/or doctors promoting their products and services.
I discovered the New York Metro chapter of the National Autism Association, which is led by parents, grandparents, caregivers, and professionals in the field. Their Website proved to be a great tool to connect with local resources, such as a support group, a free parent-mentoring program, grants to families in need, local news, autism events, volunteer opportunities, and community activities. I went one step further, connecting to the National Autism Association (NAA), to gain a broader perspective on the most current research and resources available within the field. The NAA’s mission is “to respond to the most urgent needs of the autism community, providing real help and hope so that all affected can reach their full potential.”
While the NAA’s Website is not the most visually appealing, it is quite functional and easy to navigate. Beneath cheerful black and white images of children smiling, are clearly labeled “file” tabs. Visual symbols are included on the tabs (on the upper right hand side of all pages), offering quick access to “contact,” “home,” “view cart,” and a “search” tool. I was not enthusiastic about the advertising from sponsors on the home page, but the navigation bar along the left margin presented tabs leading directly to the most pertinent information a parent could hope to find.
Placing the cursor on the first tab, “All About Autism,” launches a second menu offering, “Autism is Treatable,” “Definitions,” “Causes,” “Diagnosis,” “Symptoms Video,” “Treatments,” and “Myths About Autism.” Subsequent to the “All About Autism” link on the main menu are links to the organization’s mission, board of directors, advisors, and financial statements. The Site includes help for families, suggested readings, research projects, resources, links to local chapters, membership information and discounts, and an Online Store.
The Autism is Treatable page suggests, “Escape the Hopelessness. Autism is treatable.” While the word “treatable” could be cause for debate, the text states, “Whether it’s biomedical and therapy interventions combined, or simple therapy, autism can be treated…and thousands of children have progressed because of it.” The content reminds us, “Currently there is no cure for autism.”
The Overview section is quite valuable. It is entitled, “My child has just been diagnosed with Autism. Where do I begin?” Written for parents, the content presents an optimistic and proactive guide as to their role in supporting the best interests of their child, suggesting, “Education is key.”
The Website serves as a comprehensive resource, and is honest in explaining, “what works for some families, may not work for others.” They include, “Disclaimer: The National Autism Association does not endorse individual programs, therapies, treatments, schools or facilities, or the theories or practices of any one individual.” And, “the information provided on this page is for educational and informational purposes only and should not be considered legal or medical advice. NAA strongly believes that everyone should do their own research into the causes of autism spectrum disorders.”
There are links on the top of each page to sections below, but the design is flawed because you have to scroll quite a bit. There are no links back to the top or bottom of each page. Overall, the association has done an exceptional job, given the limited resources of most non-profits. Each page view has a tab near the upper left corner, so you are always clear what section you are viewing. The news (press) section is up to date, and dates back to January 2004.
The NAA Website is a fantastic resource for parents of a newly diagnosed child. While presenting the challenges of treating Autism, it maintains a positive attitude, and provides optimism toward the future. There may not be a “cure” to date, but NAA continues to work toward that dream. The slogan “Think Autism. Think Cure,” serves to inspire hope and encourage support from others in order to reach that goal.
The Interdisciplinary Council on Developmental and Learning Disorders (ICDL) is a non-profit organization founded by the late Stanley Greenspan, MD, and Serena Wieder, PhD. The ICDL website (http://www.icdl.com/) provides information about the Developmental, Individual Difference, Relationship-based (DIR/Floortime) model, which is a relationship based framework that parents, clinicians and educators can use with children with Autism Spectrum Disorders (ASD). The website is very comprehensive and has a section called “Getting Started,” which provides basic information and links to other resources for parents or professionals who need an introduction to Autism and the DIR/Floortime model. The site provides a directory of DIR schools and professionals in the United States and abroad. It also contains a list of local groups, e-groups and websites that might be useful for parents and professionals utilizing this framework.
The website contains lots of useful information; however, it can be confusing to read and navigate because the site contains many links that lead to PDFs. With that said, a parent or clinician could use the wealth of resources on the site before purchasing any books or attending conferences to help determine if this might be an appropriate approach for the child. The linked PDFs provide parents and professionals with many strategies that can easily be integrated into playtime and therapy sessions. The ICDL website provides great information about its methodology, but no other practices or frameworks are represented or mentioned on its site. I think it’s important that new parents and professionals realize that there are many methods, strategies and therapies for working with children with Autism and that they should use what best fits the child’s needs.
In my search for informative resources concerning Autism Spectrum Disorders, I came across the website for The Autism Spectrum Disorder Foundation (http://www.autismspectrumdisorderfoundation.org/). This website is primarily directed towards families of children with Autism. The first thing that jumped out at me about the website is that it has a “.org” address, which I’ve been taught to equate with more credible information than may be found at a regular “.com” address. At first glance, the website appears well organized and clear. There are many labeled tabs at the left side of the screen, with headings such as “Autism FAQS” and “Resources for Autism By State,” which I thought might be useful to parents of children with Autism. The section with resources for Autism by state was particularly cool to me, though upon clicking on the link, I found that there were only resources listed for three states. If expanded, this seems like it could be a very valuable resources for children, parents and families in the future. That being said, something that made me question that integrity of the information being presented was a disclaimer at the bottom of the “welcome” screen, which stated “While the Autism Spectrum Disorder Foundation (ASDF) has attempted to make the information on our web site as accurate as possible, the information is provided in good faith without any express or implied warranty.” I suppose this is something that is put there to make sure that all information is taken at face value and with the understanding that there are many sources of information out there. The website clearly explains its goals, which I think is important for parents and families who are navigating the internet in search of information about ASD. The website itself was fairly user-friendly, though it looks a bit out of date and could probably benefit from a more modernized appearance. Something minor that I would like see added would be a feature that allows you to return to the homepage, as I could not find one and had to edit the link in the address bar in order to return to the “Welcome” screen. One thing that I disliked about this site is that there were a few instances that I found while clicking through it where the phrase “Autistic child” was used, rather than the more widely accepted and appropriate, person-first “child with Autism.” This language is something that just makes me cringe! I’m sure that it may have been done mistakenly, but it still made me question the integrity of the website itself. That being said, I did find quite a few valuable resources, such as a fairly updated book list, containing some titles that may be useful to parents of children with Autism.
As I was browsing the internet to gather information about Autism, I came upon Webmd.com’s Autism section and evaluated the website (http://www.webmd.com/brain/autism/autism-spectrum-disorders). On the surface, the Autism section is user-friendly, as it has a table of contents with clear headings such as symptoms, and other places to get help (i.e. book and organizations reviews). Additionally, the information is concise, easy-to-read, and objective. WebMD does accept sponsors, but they give a list as to which sponsors are never allowed on the site (i.e. illegal activities). As I browsed the site, I learned that people with autism may have sleep issues.
However, there are some disadvantages to this website that are worth mentioning. First, the last time this section was updated was on May 19, 2008, which is unfortunate as there have been more discoveries about the disorder in the past three years. Second, while the website informs you of the doctors who reviewed the information, in order to gain details about their credentials, I needed to do a Google search. Third, since the website accepts sponsors, the layout is slightly overwhelming since the borders around the page showcase sponsors as well as other related videos or articles. However, it’s important to point out that there is a section at the bottom of the page which highlights unrelated materials.
While there are some drawbacks to this website, there is value to it as well, despite the fact that WebMD is not an organization that specializes in Autism research. For the most part, the information is accurate in that they do not claim that Autism is curable, it states that early intervention is important, and it lists the three main characteristics of Autism. Additionally, the website provides reliable references from reputable scholarly journals. It also offers parents with some useful strategies they can use to help their child at home as well as how to advocate for their child during the IEP meeting. As such, this website provides a brief overview about Autism Spectrum Disorder that is useful for both parents and professionals who have limited knowledge about Autism.
The Autism Speaks website (http://www.autismspeaks.org/) is very user-friendly and easy to navigate. There are tabs which clearly label the different information that the website discusses. The website shares information regarding the definition of autism, the prevalence rate of autism, the evidence-based research describing the possible causes of autism and the symptoms of autism.
The target audience for this website is mostly for parents. This website is beneficial for parents because it explains what autism is and the symptoms of autism. It also provides parents with information regarding the red flags of autism and when parents should take their child to be evaluated. It is great that the website describes the developmental milestones that children reach at specific ages and the red flags for autism because parents can have their child evaluated if they suspect something is wrong developmentally. Also, some parents may be unaware of the typical developmental milestones, so the website gives them a good reference tool for learning about this information. This website is helpful for parents because it describes how autism is diagnosed. It discusses the specific criteria used to diagnose autism using the DSM-IV as well as the different screening instruments that a therapist and early intervention specialist can administer to a child suspected of having a developmental delay. One specific screening tool recommended to parents is the Modified Checklist of Autism in Toddlers (MCHAT). The website also provides a link describing previously asked questions about the diagnosis of autism. Furthermore, this website is targeted at parents because it describes certain programs that are used in the classroom environment or other specialized centers to help children with autism. For example, there is a link that describes Applied Behavior Analysis and the Son-Rise program. The website explains to parents that there are different programs used, and parents must decide which intervention(s) would work best for their specific child. It is helpful that the website lists many options for parents to research. This website is also useful for parents because it explains the legal rights for their child as well as the family. It describes early intervention services, special education services, extended school year services, and how a child can begin receiving these specific services. This is especially beneficial because many parents are not aware of special education law, and what services their child should receive.
I specifically like how the website provides families with a resource guide for any state they may live in. The resource guide provides parents with information on where one can get an autism diagnosis, early intervention services, schools for children with autism, related services, advocacy/financial/legal resources, and community support networks. I also like how the website offers videos that parents can watch to observe the red flags of autism. The video shows the slight differences in typical developing children versus children with a developmental delay. This is helpful because parents can have their child screened or undergo a diagnostic evaluation if they suspect their child may have autism.
The website I visited was Autism Speaks. I found it to be very user friendly. The homepage is well layed out and aesthetically pleasing. There is an option for the page to be in either Spanish or English and this is extremely important for parents. Anyone can navigate this site successfully, including the parents, siblings and extended family members of a child on the spectrum. It is also a great site for professionals. I enjoyed “meeting” several children on the spectrum and I believe parents would as well. The videos illustrated how each child with ASD is effected differently. This was portrayed in a positive way. I enjoyed the glossary of terms and thought that the terms were defined in parent friendly language. Since there is so much jargon used by professionals, I think it is important to give the clinical terminology but also provide definitions in everyday language. I felt that the link regarding child’s rights is extremely resourceful for parents. Parents will need to know about these rights in order to be the best advocates for their child. There were also tips available for parents when dealing with the stresses of everyday life. These tips were not only helpful, but they were honest and simply stated. For the parents of a child recently diagnosed on the spectrum, asking for help, talking to someone and taking a break are all things that might require encouragement. Additionally, there was the advice to join a support group and a link to help parents do so. I would definitely recommend this website to parents.
Autism, Child with Autism, and Autistic Child were the words I plugged into the Google search engine. I found many of the same websites mentioned in class. Since I was on face book at the time, I decided to input Autism into my friends search. A Facebook page named “Talk Autism” came up as the first hit. The page connects users to parents, teachers, research professionals and blogging websites. There is also an update made daily or sometimes even hourly of about three or four rotating links. I clicked on the most recent and it led me to http://www.autismnetwork.co.uk.
The website didn’t have much to it appearance wise: basic graphics, simple colors, yet crisp and professional looking. It was easy to navigate. Headings and titles were specific and clear. There were various links to autism medical billing, teaching to toddlers with PDD, and Autism and ADHD. There is also a daily updated forum that connected hundreds of parents of children with Autism, to teachers and medical professionals. Some of the blogs, as well as the website’s links, gave information about listings of local services, books that may be beneficial to read, and contact information of the website’s author. The website in updated a lot due to the blog, and the copyright at the bottom is dated 2002-2011. Overall, I found the website to be beneficial mostly due to the blogging. There is so much access to people with first hand experiences and/or professional opinions. There are links to resources such as grants, books and videos, research , and conferences. There are also special events listings that provide a calendar of activities ,such as free art classes for children with Autism. The website seem like a legitimate and good website.
While browsing for information about Autism Spectrum I came across the website for the Autism Society, http://www.autism-society.org/, and I found this website very appealing. In the homepage it gives you various options to click on for more information. It was very user friendly and easy to navigate. They had links for different audiences like family members, individual on the spectrum, professionals and advocates. I clicked on the link for family members, http://www.autism-society.org/a-family-member.html, to see what kind of information was available to them. I was a little disappointed to see that it was a pretty short introduction about how autism can affect the whole family. It gave a very negative tone about the effects of having a child with autism. It would have been nice to see more on what the parents or family members can do to make the hardships a little easier. They did provide the parents with different links to more information on causes and symptoms of autism. They also provided a couple of outside sources for the parents or family members to look into.
While the website didn’t have the tone that was more positive for parents it did provide general information that can help those family members that do not understand what autism is. It can give them a general idea that they can then further investigate. It is hard to find a website that will set the right tone for such a topic but it is important that at least it provides some back up to its information. Overall it was a good website to start off getting information for those parents and family members who are not too familiar with autism.
The website that I evaluated was The “Autism Society of America” (www.autism-society.org). When I first glanced at the website, I thought to myself that it could have been more appealing with more graphics and additional photos depicting children with Autism. I also felt that a description and definition of what Autism is should have appeared on the home page rather than viewers having to search through different links to find it. There are so many additional links within the paragraphs that it makes the website complicated to navigate through.
The website does contain different links featured on the homepage for members of the family, individual on the spectrum, professional, and advocates; however, at times I felt that the website was at times repetitive by posting the same links under different categories. The website could of consolidated the links. For example, the same links were posted for the category of “Family Member” and “About Autism.”
I did like that the website was very clear and informative to parents once they navigated it. It provided all the needed information for parents about evaluations, re-evaluations, symptoms, medical diagnosis, and other conditions that their child may face. The website provides additional resources to parents such as support groups in their areas for them to join and the opportunity for them to share their story on the website. Another positive aspect about the website is that it offers the information in Spanish for those who do not speak English. In addition I liked the link “Living with Autism” because they define all the stages of Autism from early intervention to adulthood. They even provide links with specific colleges, employment, and living conditions that parents may be interested in looking into for their child. Another positive aspect of the website was that it provides its viewers with free Autism classes which are great for people who want to broaden their knowledge and become certified in the area.
Youtube.com is known by the majority of the websurfing population. If you are not familiar with it, it provides videos on almost any topic you could think of. When you type in the word AUTISM, approximately 95,000 results appear. The website is easy to navigate. As soon as you enter the sit the search box appears at the top. Once you enter a search a plethora of videos pop up; all you have to do is click once on the video, and you are watching. All the site has to offer is laid out for the consumer in a userfriendly way. The videos are all listed with a title and even a brief description. There are even helpful related search suggestions listed above the search results. For a first time user, Youtube.com is navigable and comprehensible.
In my search through the videos that Youtube.com provides, I found that most of the videos are geared towards parents. Some are informative and very interesting; however, not all are truthful and reliable. Many of the videos appeal to parents by presenting the characteristics of Autism, what Autism may look like, and different therapies and programs for children with Autism. While these videos provide information, not everything is entirely truthful. When looking for information, you should be skeptical of what is presented in the videos. The material these clips provide should be taken in with a grain of salt.
I find Youtube.com to be easily accessible and a speedy method of research. As a visual learner, I appreciate being able to have a visual representation of information. However, I wouldn’t recommend gathering all of knowledge, facts, or advice from this one website.
I decided to look at the Autism Society website. The first thing that stood out to me was pictures of the many faces of people and children with autism. Each picture had a brief synopsis of the person’s story. If you should choose to read the person’s story you could do so by clicking on the blue tab at the bottom of each synopsis. I loved the pictures and the title phrase under each picture. I thought it was absolutely touching. There were sayings such as “You must be yourself”, or “More like you than Not.”
When I researched this website I kept two things in mind that I thought were very important to me. The first was if I were a parent to a child with autism, how would this website be beneficial for me in providing me with the proper informational resources? The second thing I kept in mind was as a future educator, how can this website be beneficial to me, to provide me with knowledge, so that I can provide parents with resources that can be helpful to their children?
For parents there were many links that provided answers to questions regarding autism. The About Autism link had a sub-link labeled School Evaluation. This link discussed how a parent can have his or her child evaluated for special education services under the regulations of IDEA, as well as how to go about contacting the appropriate person in the child’s school. It also discussed the steps for parents looking to have their child re-evaluated. Another link I thought was helpful to families was labeled Living with Autism. This link provided information on how to seek help from Early Intervention to adulthood. It also discussed family issues such as stress that families and siblings may face. The Home page had a sub link titled Professional. This link provides people with resourceful information who are seeking services such as support groups and organizations.
Overall I feel the Autism Society website is a good informational resource for families. I think the website provides detailed information for anyone who wants to learn more about autism. Although I feel the website’s intended audience is families, I do think this website can be helpful to educators as well. It can help educators provide parents with resourceful information. The website is easy to navigate, and the information is easy to understand.
When searching the internet for accurate information concerning Autism Spectrum Disorders, it is difficult to decide what information to trust, especially if one’s level of understanding of the topic is novice. The Autism Society, provides a reliable website marketed to meet the needs of anyone researching Autism. The Autism Society meets the National Health Council Standards of Excellence and is a BBB Accredited Charity. Their site offers users the option to navigate its information as either a family member of an individual with Autism, an individual on the spectrum, a professional or an advocate and has a Spanish option. When beginning to explore the site, one may soon realize registration is required to obtain any quality information. Although The Autism Society does look to raise money for Autism through donations, registration is free, and worth it. Once registered, the website offers quality and reliable information both on its own site and through the recommendation of articles and other websites. Information offered by the society concerning diagnosis, causes and symptoms is reliable and knowledgeable. Although, it can be a lot to take in at once and some words and terms can be foreign language to people new to the world of Special Education. The site also offers an in depth explanation of treatment options for individuals living with Autism characterized by biomedical and non-medical interventions. Written by professional and accredited authors, the treatment information is very thorough and goes into great detail about what each treatment is all about. Importantly, the site does highlight how their is no cure for Autism but their are treatments available that may or may not be beneficial to any given individual. The site also offers stories, similar to case studies, written by parents of children with Autism and individuals on the spectrum. There are many stories available through the website and offer than connection back to reality that can sometimes be lost in reading about the complex symptoms, diagnosis, causes, and treatments. Their website can be found at http://www.autism-society.org.
I chose to research Twitter for this assignment, which brought up many different links and organizations. Some links were very useful and interesting, others were a bit confusing and worrisome. I searched for “Parents and Autism,” and found a good amount of positive and relevant information. My search lead to links about the red flags of Autism, suggestions for parents, informative links about vaccines, forums for people with Aspergers, informational organizations, links for advice, and links about events and workshops. All of these results appeal to parents interests and also allow the opportunity to connect them with other parents of children with Autism, as many of the people who tweet are parents or organizations geared towards helping and informing other parents.
There is a wide range of posts on Twitter; some were more media conscious such as, “With this week’s episode of Parenthood focusing on parents (Adam and Kristina) explaining Autism to their son… http://fb.me/PJbwDbiA,” which seem helpful and relatable for parents. There were also posts just about helpful ideas and practices. For instance: “Learn about #autism service dogs, a beautiful little boy, his gorgeous lil sis, and his PHENOMENAL parents http://bit.ly/hF8FO9 #forDeeds.”
The search also brought up some questionable links such as websites that are extremely offensive or that might give misinformation such as promoting the idea of a cure or questioning the ideas on vaccines. These posts can be difficult to sift through. As a parent looking through twitter, it would feel very tedious, but I think if I had the time I would get some good information out of it and feel very supported. The search words also are very important in terms of finding the desired information. The downside to such an array of results is that some of the links, though realistic, are very discouraging and upsetting.
However, the resources shared are very helpful and are geared towards parents more so than professionals. The style in which the information is given is very informal, which in some ways feels very supportive and comforting, because it’s just everyday people posting about it. One thing I’d be concerned about is misinformation or the amount of sifting that may need to be done in order to find good information. Another concern is that if a parent just stumbles across twitter, it may be extremely confusing because of all the different hash tags and re-tweets that can occur in a tweet. Using Twitter would probably involve already being familiar with the website to be able to really gain a lot of helpful information about Autism.
If I were a parent who had a child recently diagnosed with Autism, I think Twitter would be a bit overwhelming. Perhaps after a couple of months or of getting used to the idea of my child have Autism, and being more comfortable with wanting to learn more, Twitter could be extremely useful. In terms of Internet resources on Autism Spectrum Disorders, Twitter would not be one of the first ones I would recommend.
http://www.autismlink.com
Autism Link is a non-profit organization created by a mom of two kids with Autism Spectrum Disorder. She founded Autism Link to provide families and people living with ASD with inclusion, information, and support. The website is very user friendly and geared toward helping parents with children on the Autism Spectrum connect with one another. The tag line states, “linking parents together for over a decade.” The website includes a chat room, discussion boards, and also provides a mentor program that links parents with a newly diagnosed child to parents who have more experience dealing with the challenges ASDs present. Autism Link also provides parents with basic information on Autism, written in easily understood language. It has a database of services available by state including marriage and financial counseling. The website operates mostly off of donations and volunteer support. As a result, it is not as rich a resource as it could be with more funding and staff. However, I would highly recommend this site to parents seeking information, support, and camaraderie.
During the winter break, I visited Puerto Rico with my husband. Throughout my trip, I speculated about the rate of autism and what available resources were available for families and educators in Puerto Rico. I decided to research my website by conducting a Google search in Puerto Rico (www.google.com.pr/) to gather information. As a result, many of the websites that came up at home in New York were similar in Puerto Rico. One that caught my eye was the Global Autism Collaboration on http://www.autism.org. The first feature of the site that I liked was the mission statement displayed clearly on the top section. As I navigated throughout, I realized that the main purpose of this website was for organizations around the world to come together to “deal with the global autism health crisis”. Furthermore, the website included multiple external links, including some in Spanish and other languages, i.e. http://curandoelautismo.com and http://www.tacanow.com to guide the user to retrieve additional information. Additionally, the website clearly stated their outcomes and goals as an organization, as well as, their core values. I disliked this website because when I first navigated to it I assumed that it was a site for all users including families and educators, but I realized shortly after investigating more that it wasn’t. It directly didn’t provide information about the disorder or its details. It also didn’t provide educational resources for parents and families. The content of the website mainly included projects, research initiatives and information about the organization and its committee members. Overall, I believe this website is a respectable one because they are attempting to move in a positive direction towards working together with other organizations for autism.
The first website that I looked at was the National Autism Associations main website. The target audience for the site is unclear, or it is targeting anyone looking for information on autism, although I would say it was not targeting specifically educators.
The site appears at first to be sterile or medical, also slightly outdated in form and font. The site is also not personal; it does not make you feel like there is a human connection with the creator or the people behind the site. There are a few small black and white photos of children at the top, however the visual interest of the site centers around the colored advertisements on either margin. The advertisement products range from pharmaceutical companies to butterfly jewelry, which sends an inconstant and political message to the viewer regarding the intentions of their investors.
The site was easy to navigate and the information was clear. There were a plethora of resources, websites and seminars for the viewer to access, however the information was a bit alarming. The mission statement of the Association was to aid individuals in reaching their full potential, this is a goal that many people would agree with, however the resources available on the website were centered around ideas and theories that have no little or no scientific backing and are quite controversial, an example being vaccinations as a trigger for the onset of autism.
As a person working in the field, this website seemed archaic and misleading. I was unnerved by the ease at which this resource came up in my search and how my initial impression was that it was a credible source with medical backing. A new parent could easily fall victim to the very political opinions of this text.
My second website was autismspeaks . Immediately this site appears updated and current, the design and images are relevant if the viewer has a personal connection of ASD then they can relate personally to the homepage of autismspeaks.
The target audience for this website is parents and families of people with ASD. The site is informative in topics such as basic information, what to do when you are get a new diagnosis, scientific study and how to get involved. The site does a nice job of feeling welcoming to parents and answering their questions with optimism. This site also offers non-bias information on a variety of therapies, which can be a very polarizing topic.
The site is easy to navigate and well designed. Resources are categorized by age of the diagnosed (EI, school age, young adult/adult) as well as the local area by zip code; this offers a system that is both relevant and efficient. This site also had a link to all of their social media contacts and how to become connected, which is proof of their social relevancy.
Autism Society (www.autism-society.org) is a grassroots autism organization whose goal is to improve the lives of those affected by Autism. The organization has a great website which is an excellent resource for anyone looking to learn more about Autism Spectrum Disorders (ASD). The website has a nice layout which is user friendly and easy to navigate. The main page highlights relevant articles and stories through a rotating menu. The menu draws the user in with its high definition pictures, short text and easy to navigate links. In addition the site provides an “I am” menu which personalizes the user’s experience. The “I am” menu includes a link for a family member, an individual on the spectrum, a professional and an advocate. After navigating to one of the above links the user is provided with information and links regarding their category. Although this menu personalizes the users experience I think the family link could be broken down even further into links for parents, grandparents, siblings and extended family. In addition I think the links found under each category could be more personalized. The site also has a “Living with Autism” tab which provides the user with an array of information which would be most helpful for parents. The tap has information and links on navigating services, autism through the lifespan, treatment options and more. Another great aspect of the site is the “Get Involved” tap. This tap provides the user with the many ways they can get themselves involved in the Autism community. In this section the user can also take free online courses in order to learn even more about ASD. Overall I think this site provides relevant and important information about ASD which is organized and easy to navigate.
The National Dissemination Center for Children with Disabilities (NICHVY) is an extremely useful website with reliable information for parents (and professional) of children with Autism. The website is http://www.nichcy.org/Pages/Home.aspx and the information in the website can also be found in Spanish by clicking “EN ESPANOL” tab on the upper part of the website.
The National Dissemination Center for Children with Disabilities is designed to provide information on disabilities in children and youths (with a focus on children from birth to age 22); information about programs and services for children, information on the special education laws, and research based information on effective practices for children with disabilities and other resources. The NICHCY offers a toll-free number (1.800.695.0285), bilingual services, and a team of research and information specialist who are available to talk and address individual questions.
The layout:
The website lays out four primary tab options in color on the top of the page: Families and Community (yellow), Early Intervention Providers (purple), Schools and Administrators (red), and State Agencies (silver). The sub-tabs are located on the left side of the website. The home page allows for all main tabs and many sub-tabs to become available for easy finding on the left side of the page. Some of these options include Disabilities (which details the milestones, specific disabilities, and categories under IDEA), Help Babies (this provides information about the early intervention program, procedures, and strategies), under those options, additional information such as services, placement information, support, evaluation, and information about disabilities is provided. The site does a great job at detailing laws (IDEA, NCLB, Section 504 – ADA, and other related laws), resources, research, news, and a blog with credible and research based information for parents and professionals.
The website can be fully view in Spanish. The information in the NICHVY website is intended for families but also for professionals, schools, administrators, and state agencies and staff.
In addition, the website does a great job at providing ample research based information about disabilities such as Autism Spectrum Disorders (ASD), it even provides a fact sheet in .pdf format that can be easily printed and shared with parents and professionals. This useful website does a great job at providing information on characteristics of ASD, specific disorders on the spectrum, how common the disorder is, help available for families, schools information, and tips for parents and teachers. A link to references and organizations with the intent to assist families is also provided.
Likes and Dislikes:
I really enjoy that the NICHCY website provides a very useful six page fact sheet a brief story of a child is written, the characteristics of Autism Spectrum Disorders and the specific disorders on the autism Spectrum are describe in a parents’ friendly language. References are provided at the end of the small fact sheet along with names, websites, and phone numbers of organizations that can help families (Autism Society of America, First Signs, Autism Speaks, OASIS @ MAPP, Autism Collaboration, Organization for Autism Research, National Autism Center, and many more).
I was very happy to see that 95% of the website can be translated in to Spanish. The few exceptions include the blog section of the webpage and the main colored tabs are no longer visible. These tabs help separate information for the different target groups.
One of the main areas of opportunity for this website is to create a better contrast for readers. For example, it is very difficult to read the blue font use for the option tabs on the left of the page because the background is also blue. Some of the options on the bottom of the web pages and sub-pages are small. A bigger font would help the visitor to better find this additional information.
I would strongly recommend the National Dissemination Center for Children with Disabilities’ website.
This organization does a great job at compiling research based information in one site, for families and professionals. The information and resources provided for the autism community is abundant.
Noe Canales. SPEDE 771. Website Review.
Autism is an interesting subject, which has a lot of power over the Internet. Since there are so many questions people have about Autism and there’s so much to learn, the Autism audience can be taken advantage of. The audience for autism can range from vulnerable parents to curious students.
A website which I believed was interesting was the Association of Positive Behavior Support. This website made me curious about it’s intention. The first thing I noticed about this website was the banner of people on the top of the page. The banner consists of 6 people three of whom are children and the other three are adults. All six people are holding hands and the backdrop is of a sunset. The links on the side bar indicate that this website is based on a membership which you have to pay to join. According to the mission statement, APBS is an organization, which requires a membership. This organization is to spread the understanding and research on positive behavior. I believe that this website is useful for parents and teachers who want to be part of a an organization but it’s lack of specifics would make it difficult for people in this organization to relate to each other on an exclusive level the aim of the website seems to be a bit too general because there are so many behavioral disorders and so much to focus on.
Autism.com (ARI) is another website which caught my interests. The most unavoidable trait that this website has is its statement: “AUTISM IS TREATABLE” and right under this statement they’re an ARI call center number. Below this strong statement is a dropdown menu to find local clinicians. On the left hand menu there are audio supports and in the middle of the page there is a list of featured articles. These articles range from being informative to self-advertising. This website is clearly geared towards parents who are desperate for a cure to Autism.
ARI and APBS are two completely different websites, although both sites have their own intentions, APBS seems to offer a more sincere approach to creating an organization even though it isn’t a very specific organization. ARI is a very bold website and offers false information. ARI tells the audience that it has a quick fix that is successful. ARI has a different approach and instead offers a safe haven and doesn’t guarantee that problem behaviors will go away quickly.
Manitas Por El Autismo (http://www.manitasporautismo.com) is a great Internet resource for Spanish speaking families. The website is easy to navigate, has colorful visuals, uses simple wording and is organized according to subject of interest. Through the website users can learn about common questions that parents of child with autism may have such as definition, symptoms, how a child is diagnosed and treatments. In addition, the website provides summarized information regarding scientific studies and findings about autism. I thought the information provided users with a simple overview of autism in Spanish. I think the use of simple text is useful since parents of a newly diagnosed child may become overwhelmed with complicated terms that they may not be familiar with. In addition to the overview that is provided, the website also provides more information regarding autism in their learn more tab (aprende mas) where they can read more information regarding autism.
The Manitas Por El Autismo website also provides users with the opportunity to sign up for a newsletter, obtain news regarding autism and links to autism sites and agencies in different Spanish speaking countries. The site also provides information regarding services and resources such as Early Intervention and different programs for children with autism. I think, overall the website provides families with a newly diagnosed child with an overview regarding the diagnosis and provides families who may want to communicate with other families or professionals with a forum. The website is also useful in helping parents start the process of looking for services and contacts for resources in the language that they speak.
When conducting a search for “autismo” in google, I also found another site called Childbrain.com (http://www.childbrain.com/pdd_print.shtml). This website was among the top hits for the search “autismo” and was the complete opposite of the Manitas Por Autismo website in that the information provided in this website is complex and is not user friendly. The website lacks visuals and just provides a list in the beginning of the website of various topics such as definition, diagnosis etc that a user can select to obtain the information. However, although the topic is listed in Spanish the text is in English. In fact, I could not find any information in Spanish besides the list in the beginning of the website that should direct the user to the information in Spanish. I think a Spanish speaking parent of a newly diagnosed child would not find this website useful do to this reason.
Jessica,
I personally like WebMd and I have used it throughout the
years. Like you, I also think that it is very user friendly and the information being offered to the public is clear, right to the point, and easy to read.
While reviewing the website I chose to write about, I also came across the same issue of information not being up to date with the current research available.
Overall, I think your critical review was very clear and specific when describing the disadvantages of the website. You did an excellent job listing them while providing plenty of examples to prove your point.
Magaly
The website had many great features that I enjoyed, such as the animated buttons, the colorful title on the homepage, and the vast information posted on it. I also like that information is given on the creator of the website, so that parents of children with autism can be reassured that this website was made by a board certified behavioral analyst, with plenty experience with children with autism. I think the website was lacking in certain things—such as having pictures or videos as extra resource or support for the parents. I also believe the website layout/design could be improved—it looks a bit bland. Also, the research articles they have posted up should be updated; the last article was published in 2007. The presentation of information is done in an organized manner, with tabs of new information linking to new windows. Information about autism is presented in a scientific way—definition according to the National Institute of Mental Health. The information states that autism does not discriminate—any person from any race, ethnicity, age, etc can develop this disorder. On the homepage, the targeted audience is stated as the parents of children with autism who are seeking information regarding services, treatment, and/or resources. There are resources available on the website such as articles, and also links to books in Spanish and English, and links to several websites. Overall, it was a good website, but the listings of centers for early intervention/treatment are situated only in Spain.