Home > Adults with autism > Autism’s “Fly-Over” Population

Autism’s “Fly-Over” Population

This is a guest post from Mark L. Olson in response to the New York Times article, ‘Navigating Love and Autism.’ Mark lives in Henderson, Nevada where he is the only parent of a 16 year old daughter with autism; Chairperson, Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders; and, President & CEO, LTO Ventures, a 501(c)(3) nonprofit company developing live/work/play communities for adults with autism.

I read with mixed emotions the December 26th New York Times article “Navigating Love and Autism” about Jack and Kirsten, a young couple with Asperger’s Syndrome discovering how to have a relationship with each other.  The romantic in me found their story inspiring and hopeful.  But as the only parent of a teenage daughter with autism, another part of me felt frustration about the lack of attention to and help for autism’s “fly-over” population — the huge group of teens and adults who are often nonverbal, may never expect to live independently, yet deserve the chance to choose the kind of life they want to live.

“Fly-over” is a term I heard often growing up in the Midwest and attending University of Kansas.  It refers to the majority of the US between the East and West Coasts that airline passengers look down on when they fly over.  It also refers to a mindset in the media that the most valuable audiences are located in New York and Los Angeles, and to which their programming overtly caters.

Autism is a broad spectrum disorder just as the U.S. is an expansive land mass and melting pot.  A favorite expression in our community is that “if you’ve met one person with autism, then you’ve met one person with autism.”  Our community and efforts to help persons with autism benefit from all the awareness we can generate, but sometimes it feels like that attention falls largely onto two ends of the spectrum.

At one end, thanks to organizations like Autism Speaks and others, kids as young as 18 months benefit from more research dollars than ever directed toward finding the cause of and a cure for autism, while insurance mandates are in effect in the majority of states that emphasize funding for ABA therapy and early intervention, diagnosis, and treatment.

At the other end of the spectrum are the Aspies and HFA teens and adults like Jack and Kirsten who are the focus of media coverage, movies, federal programs such as Medicaid and the President’s Year of Community Living.  They are also the primary beneficiaries of the Protection and Advocacy (P&A) Network created by Congress and self-advocacy organizations bent on eliminating all barriers to living and working exactly the same lives as “typical” Americans.

But what about the fly-over population?  My daughter is one of them and we live this struggle every day.  (I also run my own 501(c)(3) nonprofit company developing live/work/play communities for adults with autism and chair a subcommittee for the Nevada Autism Commission on community living and employment.)  I see this issue from many perspectives and I’m increasingly disheartened by the chasm of resources and choice expanding between our community’s newest affected and our most capable.

My daughter is 16 and nonverbal, although she can hear and understand some of what is said to her.  She’s not high-functioning enough to enjoy true independent living, and diagnosed at age 12 she was too old to benefit from aggressive early intervention protocols.  I expect she will stay in her special needs school until her IDEA eligibility runs out and we are planning for guardianship now. But I’m also 39 years older than her and while I like to believe I’m immortal, I’m pretty sure I’m not.  So that means planning for where she is going to live, what kind of work she might do, and what chance at a social life she can expect.

Let’s start with housing options.  My daughter deserves the right to choose any residential setting in which she wants to live.  It is estimated that 85% of adults with autism live with parents or a family member until they can no longer be taken care of.  As with many kids with autism, there are daily living skills she does well, and others (bathing, feminine hygiene, house cleaning) that are a challenge. Some disability self-advocates argue her only option outside of my home should be in her own apartment or home no closer than 1000-1500 feet from any other disabled person.

She can’t live alone in a scattered site apartment because she doesn’t know how to cross a street safely, or how to avoid neighbors who might bully, exploit, or abuse her.  It’s a ludicrous notion to expect her neighbors to be her “it takes a village” safety net.  She can feed herself, but she cannot use a stove or microwave to prepare a hot meal.  A setting where she could go to eat or pickup meals of her choosing would be ideal.

A planned residential community optimized to accommodate her autism such as a disability-based campus or farmstead would be a great solution.  Unfortunately, Medicaid, certain self-advocacy groups and the P&A Network are doing everything they can to deny her freedom of choice and impede development of innovative settings. (Read more at “Choice v. Olmstead“)

Now let’s talk about work.  My daughter is blessed with exceptional physical strength and decent gross motor skills.  With supervision she can do fine motor projects and follow multi-step instructions…for a while.  But she cannot speak, read or write.  She will never be able to pursue competitive employment on the open market, but that doesn’t mean she can’t earn a minimum or higher wage.  A work environment created to accommodate and develop her abilities would be ideal.  But again the same forces are at work to eliminate these optimized settings as discriminatory.

Would she like a social life?  A relationship like Jack and Kirsten?  I don’t know.  I do know she is highly sociable and enjoys the company of affected and typical kids and adults.  A setting where she could freely walk around, meet up and hang out with persons like her and enlightened members of her surrounding community would be ideal.  But transportation, availability of programs, and lack of funding marginalize anything except a public park or shopping mall.

Jack and Kirsten’s story is informative and heartwarming.  But as we enter 2012, I implore the autism community, media, government and especially those self-advocates who resist progressive thinking and innovation, to not forget the impact they have on our “fly-over” population.  Their story deserves to be told too.  They deserve the right to choose how they want to live.

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For more information:

LTO Ventures

Community Living & Employment Subcommittee, Nevada Commission on Autism Spectrum Disorders 

  1. Geraldine Bliss
    January 4, 2012 at 12:47 pm

    Fantastic post Mark! I live in Texas, where some of my friends and I have been talking about this problem. We share the same vision for our children as you, but HOW we can build sustainable, replicable communities is an overwhelming project! Some of the ideas we have floated are microboard co-ops (pooling waiver program funds), tax incentives for developers, other public-private partnerships (for example, to engage employers or community-based service providers), and the list goes on and on.

    I really admire what you are doing through LTO. I wonder, though, how replicable the LTO model will be if it does not accept insurance or any government funds. Rather than rejecting waiver program funds outright, have you considered the idea of microboard co-ops, which increase the utility and flexibility of waiver program funds? I wish you great success and look forward to hearing more about what LTO Ventures is doing.

    • January 5, 2012 at 12:03 pm

      @Geraldine, thank you. I have looked at microboards and I like them as one part of the solution. Tax enterprise zones, etc. all can be elements of a largely or wholly private solution. A new development – B Corporations – offers a very interesting neew opportunity we are examining closely. I am presently writing a white paper on a financial structure for LTO Ventures’ communities. If you sign up for our newsletter or to follow the posts on our blog/website, you’ll see it when I publish it.

      The problem with public funds for our communities boils down to 2 major points: 1) Medicaid and Olmstead. We will serve up to 100 persons per community. Medicaid, the Protection & Advocacy Network, and certain self-advocates oppose our model (and choice in general)arguing the only acceptable residential setting in which to receive Medicaid-funded services is a scattered-site apartment or an individual’s home; and, 2) Availability of funds. There is a chronic shortage of Medicaid funding at the state level to match federal funds. Waiting lists top 122,000 nationwide, up 71% from 2000, the first year after the Olmstead ruling. New Section 811 funds barely scratch the surface of the problem, and those funds and LIHTC tax credits are only going to a handful of developers building the same tired concepts.

  2. Katie Wright
    January 4, 2012 at 2:52 pm

    I agree. It has been so frustrating that the NYT has portrayed aspergers as autism, in general. I think they falsely give the readers the impression that most ASD children are HF and verbal. If only romantic problems fit into my son’s set of issues!!! I would love that!
    I really want to see more realistic coverage of the ASD population in the media. Everyone is not a savant or a 3 yr old who gets early intervention and is fine.

    • January 5, 2012 at 12:13 pm

      @Katie, thank you for your comment. I presume you are THE Katie Wright. I met Suzanne and Bob at a 2005 fundraiser in Las Vegas with Tom Brokaw, Jay Leno and Natalie Cole. My daughter and I were one of four families featured in the video segment. I hope you and I can meet someday. My desire is that all segments of the ASD and Aspergers communities get the airtime they deserve, and I’m delighted that Jack and Kirsten found each other. When I look at the challenges of raising funds for LTO Ventures communities, I realize the population we serve (not coincidentally largely the “fly-over” population) is not the most photogenic or even an easy story to tell in a soundbite. Celebrities glom onto campaigns with kids in hospitals, or cancers, or polar bears. Billionaires attach their names and money to water, education, poverty, human slavery, and vaccinations (don’t get me started on Bill Gates) — all incredibly worthy efforts. But ask them to drop $5-10 million on developing a private, self-sustaining live/work/play communities for adults with autism that solve a problem people expect the government to magically solve…

    • January 11, 2012 at 1:22 am

      Katie, You are the first voice we hear who expresses waht I and my husband say every time we see another well written and fascinating article in the NYT on inidividuals with Aspergers or HF Autism. We wish them happy lives but this knd of article and the bias of teh press for catching stories makes our kids who have the autism challenges of being non-verbal, differently social and extremely challenged and unable to live independently — it makes our older kids and grown up children the “FORGOTTEN PEOPLE” . There are stories to tell but we must write them for the press — we parents with the children with profouodn atuism must be more self advocating and outspoken ,and reach out more to make our voices heard. We must attend meetings and conferneces with the legislators and write to foundaitons to open their eyes to this very DESERVING FUNDING NICHE- adults with profound autism – . The parents could help educate foundations and wealthy individuals that they could leave a legacy by helping build residential community soltuions that would accommodate autism challenges and talents such as a campus or farmstead where our children flourish.

      FAP is workign to build such a surban/ rural community – a farm academy – and even though the CT DDS is very interested in our project they do not help with capital funds.They will help with the operational funds once the farm is built.

      Katie, Thanks again for making that remark without hesitation . Aspergers is Aspergers and Autism is Autism – they are connected but very different . Our kida challenges are basic and we do not talk about going to college and dating . We talk hygiene and crossing the street safely. I would like to meet you some time . We are in each others backyard practically as I am Connecticut. I participated in AutismSpeaks’ first Walkathon and several after that with a large FAP contingent. My husband and I met your mom and ‘Dad at several fundraisers where we probably were the first to ever talk to them about helping adult kids with autism. (Kids with autism are like children still at age 21 when school supports sto p that is why I compare them to children.) Can you advocate with your parents so AutismSpeaks help fund adult living solutions endeavors and other adult programs on a larger scale?

      Brita Darany von Regensburg

      • January 14, 2012 at 12:26 pm

        @Brita, thank you for adding your story to the conversation. I wasn’t aware of your project and now I am. Hopefully others will see it here and help. Do you know the group Agricultural Communities for Adults with Autism (www.ac-aa.org)? If not, please visit their site and consider becoming part of the group. They are doing great work and have a conference planned for mid-year. You might also check out the FRED Conference in Los Angeles in March – http://www.fredconference.myevent.com/3/events.htm. Best wishes for your success.

  3. Bill Wills
    January 4, 2012 at 4:12 pm

    You are spot on about the fly over community. Although Jack and Kirsten’s story is heart warming and I certainly wish them all the best in the world. Having a son who is now 24 years old and myself going on 54 at the end of this month. Makes you sit back and think what will happen to him when my wife and I are gone. Our son is very similar to your daughter. Although he lives at a facility called Bancroft in New Jersey. We are concerned and only hope that this organization will keep going,as they have done for 128 years, after we are gone.
    Best of luck with your developing a Live/Work/Play community I think that concept would work for this population. To be able to get a community like this to work will take a lot of work as you mentioned and one of the biggest hurdles is the financing and getting the (powers to be) to get on board. Thank you for sharing your story with us and please keep us informed with your progess.

    • January 5, 2012 at 12:17 pm

      @Bill, thanks for your kind words. I wish the best for your son. I live the age gap issue same as you. Yep, what we’re doing is hard, but the current solutions are not meeting the need now, much less remotely prepared to meet the “tsunami” of demand coming in the next 10-15 years. I have little confidence in government-supported solutions, hence our private self-sustaining model. But then again, if it was easy, everyone would be doing it. Please let me know of anything or anyone you think might be useful to our efforts. My email is on my website.

  4. January 4, 2012 at 7:49 pm

    That’s a great story Mark. I am actually Jack’s father, and I am on the Science Board here at Autism Speaks. I agree that we must not forget the population with more severe challenges. I wrote an essay the other day on that very topic that has generated quite a lot of discuss. You can find it here.

    http://jerobison.blogspot.com/2012/01/looking-forward-at-autism-spectrum.html

    We have the story linked here on the Autism Speaks blog as well. I’d welcome your thoughts on that.

    We certainly do need to make a place for kids like yours. What you write about is essentially the way in which our more complex technological society has rendered kids like yours disabled, where they would have found a place in the community 100 or 150 years ago. I have a cousin, Anna, who is much as you describe and I feel exactly the same about her.

    Best wishes
    John Elder Robison

    • liz
      January 5, 2012 at 11:47 am

      John- I appreciate all you have written- your books have helped me understand my husband and son a great deal. And now your book has been passed to a relative helping her understand her son as well. While this isn’t the best forum for feedback unrelated to your comment- I couldn’t resist.

    • January 5, 2012 at 12:31 pm

      @John, I know who you are and I have huge respect for you and your accomplishments. I follow your work and your posts on Twitter (I am @LTOVentures). I read your essay and commented on it (shows me as “unknown” post on Jan. 2 @ 9:50pm) I took one tiny exception to one sentence in it, but I agree wholeheartedly with the rest of it.

      You raise an excellent point here about a place in society now vs. 100 years ago. Self-advocates argue that persons with ASD like my daughter can live in the general community and can expect “the village” to participate in her care. But we know that now, more than ever, that’s simply not true. A mission focus on changing the world to accept and embrace the unique qualities of our ASD kids, teens and adults is a wonderful vision and we must continue to try, but when it becomes the basis for regulatory change, it is lethal.

      The situation now and coming oh so quickly demands innovation, CHOICE, and acceptance. I sincerely appreciate your comments here and best wishes to you, Jack and Kirsten.

  5. Susan Faulkner
    January 5, 2012 at 11:33 am

    Loved your article. My daughter is verbal, but while she is high functioning, she also has Mild to Moderate Intellectual Disabilities (Mild to Mod MR). She also will not talk to most people. She has Selective-Selective Mutism (my own term for her version, lol) She will never be able to live alone. She cannot cross the street, go to a store and be able to by decent food (she will get coke and cookies every time-She is 17)…I worry if a stranger were to offer her coke and/or cookies, she’d go off with them! There are NO programs here. I am just starting the process of guardianship. My health is not great so it’s an everyday worry. What happens when I am gone? How will she survive, where will she live? Will people be kind to her or she will fall victim to abuse and neglect? It’s a terrifying prospect.
    Thank you for bringing attention to our children.
    God bless!
    Susan

    • January 5, 2012 at 2:00 pm

      @Susan, thank you for your kind remarks. My daughter is much the same. Look into a Special Needs Trust if you haven’t already BEFORE you get too deep in the guardianship work. Parents often make big, but well-meaning, mistakes with money for their minor children. A good place to start is http://www.thesnpcenter.com. Smart guys. Ask for Scott or Heath and tell them I referred you. There are other Special Needs Trust experts across the US if you want to research the topic. Do you have a Continuity of Care Plan written down for her now in case something happens to you? Something to look into and a way to make sure the quality of life you have created for her can continue in the event something happens to you.

      • Susan Faulkner
        January 5, 2012 at 3:16 pm

        Thank you for the advice. We do have a case manager through a local agency that is helping me set up a CCP. Will look into the snpcenter.com. I appreciate that you take the time to respond to each person who comments on your site.

  6. liz
    January 5, 2012 at 11:44 am

    You are so inspiring. Great article. Wow how lucky she is to have you for a dad. I have a son with HFA and I spend so much of my life and worry focusing on him and advocating his needs I don’t often think of the ‘fly over’ group. I appreciate this article’s reminder to me I am part of a large community and the support I can offer them as well.

    • January 5, 2012 at 2:02 pm

      @Liz, all parents of all kids on the Spectrum are heroes. We appreciate your support and all you do for your son.

  7. Linda Stewart
    January 5, 2012 at 11:45 am

    Thank you for your story. My 16 year old autistic son is non-verbal and still in diapers. He requires 24 hr care. I am 56 and it is my greatest fear what is future will be without me, as I am is only caregiver. He has 5 more school years, after that I don’t know what I’m going to do. Once again, thank you for spotlighting this. God bless.

    • January 5, 2012 at 2:07 pm

      @Linda, it continues to surprise me how many parents I talk to with kids on the Spectrum who have not yet begun to think, much less plan, for their kids’ adult years. The denial is deep. I appreciate Autism Speaks and other organizations beginning to devote serious resources to pulling together and promoting information to help parents. Hang in there. Your son is lucky to have you fighting for him.

  8. January 5, 2012 at 11:46 am

    Thank you for sharing a bit of your daughter’s story, your experiences and your concerns, Mark. Also, thank you for being an advocate for people living with Autism. As the mother of a nearly 5-year-old, non-verbal “fly-over,” I have the same thoughts that weigh heavily on my mind every day. What will happen to her when we’re gone? Who will make sure she’s ok and not abused or neglected? It’s a horrifying thought for a parent who realizes the system is not adequate or developed enough. What will happen to our precious children in a few decades? The number of fly-overs is certainly not decreasing. While I’m so happy that people with Autism and other disabilities are being recognized and accepted more by our society, I always read these stories knowing that we’re one of the exceptions to the rule, as progress is incredibly slow and uncertain… And I’m left wondering what I can do, what we can all do to make sure that programs are in place to ensure that adequate, dignified treatment and support are provided to our children long after we’re gone.

    • January 5, 2012 at 2:13 pm

      @Krista, thank you for sharing your story. As for what you can do…vote with your feet, voice, money to support settings and communities for ASD adults that you like. Volunteeer. Join a board of directors. Donate $$$. Advocate. Don’t accept what the status quo entities give you as options if you don’t like them. A few years back when I became the only parent for my daughter, my friends would ask me what my plans were for my daughter when she got older. I always thought she’d be with me until I realized I had no plan in the event of my early demise. I looked around at options and didn’t think anything fit her. I did a lot of research into the WHOLE world in which she would live, and from that the vision for LTO Ventures was born. And now I’ve devoted every waking moment toward making it a reality.

      • January 5, 2012 at 4:02 pm

        Yes, it’s important that we all put the work in to make changes. You’re a true inspiration & remind us to work harder. Thanks, Mark!

  9. Kristi
    January 5, 2012 at 11:55 am

    As the mom to a newly diagnosed child with asperger’s I feel like awareness is good. I don’t think anyone wants to ignore or leave out any segments of the autism community. When one writes a story about life with breast cancer, it does not negate or trivialize those battling leukemia or other cancers. Awareness is just that: awareness. That is not a substitute for knowledge of the issue at a deeper level. It is our job as parents to inform, educate and advocate for ALL our children: autistic, “neuro typical”, gifted, physically challenged…and on and on. No two people are the same. No two people experience life in the same way. Just because one’s challenges aren’t the same as another’s it doesn’t make them in-valid. I say, spread MORE knowledge and MORE understanding…without the “my struggle is grater than yours.”. We never truly what it is like to walk a mile in another’s shoes. I seek to live my life with verstehen (understanding) for all.

  10. Rachel
    January 5, 2012 at 12:16 pm

    Thank you Mark for posting this. As a parent to a 6 year old autistic child, I too wonder what his future will hold?? I also wish I could live forever to make sure he is taken care of. We parents need to unite and try and address such issues, so when the time comes, they have options.

    • January 5, 2012 at 2:19 pm

      @Rachel…so true. That’s why I exchanged a lucrative career to create LTO Ventures and make my vision of live/work/communities a reality and an option. Our kids have the right to their CHOICE of how they want to live their lives. I’m pleased also to have the chance to champion these rights for Nevada kids, teens and adults. If you’re not already involved with a setting you like or a group or committee, I hope you’ll find one that you like. I think you have a lot to contribute.

  11. January 5, 2012 at 12:40 pm

    Good post. We are a part of the fly over group you discuss. I couldn’t have put it better. Thanks so much.

  12. linda
    January 5, 2012 at 1:29 pm

    Thank you for your story Mark. As the mom of a 6 year old who is completely non-verbal, it’s so hard to make people understand what our struggles and concerns for her future are – especially with the proliferation of Asperger and savant stories confusing the general public. The reality is far more complicated than the movies make us think…

    • January 5, 2012 at 2:24 pm

      @Linda…that is so true. I try to use many of our moments out in the general public as “teachable moments”. I’ve taught a lot of kids 10 simple ASL signs they can use to communicate with my daughter. It’s funny how they get so excited that they can “speak” another language and that my daughter responds back to them. Keep fighting the good fight!

  13. January 5, 2012 at 3:18 pm

    Thank you so much for shareing this. My husband and I have 5 kids and 3 of them are on the spectrum! True if youve met one youve met one. My sister in law has a 16 yr old boy w. bi-polar and aspergers and she is having a really hard time finding any where for him to go. His behavoir is not ok. Soon we will have many adults on the spectrum …..than what? Our 18 yr old daughter (high functioning) but still not able to be totally independent….We would keep her forever but as you said we probably wont live forever, and she would like to be independent so thats what we are working for. Our 11 year old Megan is more severely affected and when you wrote about a place that your daughter would do good in I was thinking that would be a great place for Megan too. We could start one with all our extra time right?

    • January 5, 2012 at 4:36 pm

      @momncaili…I think we all want to create very special places for our kids where they will continue to get the same love and caring we give them. It’s a full-time job if we try to do it ourselves. In my role with the Nevada Autism Commission, I get parents asking me (sometimes telling me) they and a few friends are going to start a group home for their kids. For parents who have the means (mostly financial) to do it on their own, it’s challenging, but possible. The second you plan to do so with the intention of using federal and state funding, you cross over into a highly-regulated and much more difficult realm. I’m working on a couple of documents I’ll publish later this year about how to start a group home and how to start a farmstead. I wish you and your husband the best with all your kids, especially your 3 on the Spectrum.

  14. January 5, 2012 at 5:52 pm

    Thank you for a shedding light on an often ignored population, the fly-over group. My daughter, who fits this fly-over model like a glove, will be aging out of school on March 12, 2012. This age-out date has been looming somewhere in the back of my brain since she was diagnosed at the age of three…only weeks away. I once spoke at a national conference many years ago when my daughter was still a little girl where I addressed the fact that a child with autism DOES indeed grow into an adult with autism. I felt this fact was greatly ignored, especially back in the day. I had one huge advantage in preparing my daughter and that was I’ve been planning for this transition for 19-years and used every resource available to me and never forgetting that she wasn’t going to stay a little school-girl forever. Even with 19-years to carefully and methodically plan for her future, there are still issues and roadblocks we are hitting, some one after another, but we are making great progress toward a life that we’ve hoped and dreamed for our daughter. I wish I could say there is an easy or fast fix, but I can’t. If we as a community with a common goal work together, nothing can stop us. United we stand, divided we fall. Godspeed to all the parents and their beloved children. Michelle G., Florida, USA

    • January 6, 2012 at 3:19 pm

      @michelle, thank you for sharing your story. Have you written anything about your research and planning that others could read and perhaps learn from? I think you could help others by sharing your journey. Let us know here.

      • January 10, 2012 at 6:56 pm

        Mark, you are most welcome, I’m happy to share our journey which as been full of ups and downs and still a developing story. The back story: At this time, as I said in my post, my daughter ages out of school in about 10 weeks, it seems like only yesterday that she had 17 years before aging out, now we’re in the home stretch. It’s been an emotional time, mostly for me as my daughter’s school placement (primarily main- streamed since pre-school involved in a fantastic peer mentoring program throughout HS and the years post graduation as well. School has been a wonderful experience from A-Z and it’s giving her something fun and diverse to do every single day for the past 19 years and in weeks, it’s GONE. My daughter is, as I stated in my initial post, solid fly-over…independence and marriage aren’t on her to-do list in this part of her journey. Since we had 19 years to plan, we’ve had an advantage. The current story: We are leasing a property with agriculture acreage in a rural, beautiful area within 30 minutes of our home. We are fortunate to have a built-in market for our produce (a long story) and my daughter as well as others with autism and other similar challenges will run the farm (hydroponic growing systems) and use the proceeds to continue to develop the farm. We also have an animal center where we will have therapeutic animals that the adults can interact with, ride and learn to care for. A rescue has already donated 2 adorable mini-horses that are living in the barn on-property. My daughter will be living in a house on the property with several roommates as well as in-home support staff; ideally around March 12,2012, her school age-out date. We are using all the services available (we are in FL & therefore have limited state resources available at this time). I will utilize everything available to me piecemeal until the farm is self-sustaining which will take at least 1 year according to our data. Getting everything into place has been a long, difficult task to put it mildly. We’ve hit all too many stumbling blocks including that fact that Florida froze ALL funding increases for persons on the Med Waiver 6 months before our project officially began (a huge hurdle). We are in contact with Florida, C.A.R.D to document all progress at the farm so that others that are interested in a similar project will have a road map. We won’t be officially at the “Grand Opening” until our first planting in early spring. At this time, we are working on getting the greenhouse supplied and all the shelves in for planting the seeds. The hydroponic systems will be outside the greenhouse. We also plan on opening a produce kiosk to sell the produce that we grow at the local farmers market on Saturdays as another way for my daughter and the others to have a fun and productive opportunity on Saturdays. There is so much to talk about, I’m very excited with anticipation for my daughter’s new “independence” she deserves, needs and will enjoy. Godspeed. Michelle G., Florida

  15. January 5, 2012 at 7:57 pm

    We self-advocates are not trying to throw anyone out in the cold. We look at segregated, congregate communities out of the public eye, where abuse is hard to report, where people are kept apart from their communities, and see an environment we would not wish on anyone. Here in Georgia, people with very involved disabilities are working and moving into independent living. It has been a complex program to start, but the wheels are turning. It is happening. If supported employment and independent living can become the norm in the Deep South, it can happen anywhere. I want vibrancy, diversity, in the place I choose to live. I want no less for your child.

    • January 6, 2012 at 11:07 am

      Larkin, I see from your profile that you are a female college student. My child with ASD is male, age 24 and 6′ 1″, close to 300 pounds. He will never be able to drive a car due to the type of epilepsy that he has. So he will either be walking, depending on public transportation, or depending on others for rides for the rest of his life. And yes, he is quite verbal, but talking on online forums isn’t really his thing; he leaves that to mom.

      When people see a ‘big dude’, alone, a little ‘different’ – their minds don’t immediately think, “Oh, isn’t diversity grand!” No, they think, “Hmmm, I think I’ll keep my distance,” or “I’d better keep my children away from him.” In reality, my son with ASD is a big teddy-bear…but strangers don’t know that.

      So I ask you, just what is HIS “community”? The people who take a few steps away when he walks by…or the people in a planned “community” who know that he has a disability, is harmless and can be a friend? HIS choice is to live in such a planned community, where he can walk to a friend’s apartment or go to a social center to see a movie without people calling their little children away in fear of the big guy. (And yes, he has spent some time – but not right now – living in residential settings, so he knows the pro’s and con’s, having experienced it first-hand.)

      Now, I hope that you can have everything you want for the place you choose to live. But please respect MY son’s right to want what HE wants…even if it isn’t what you would prefer for yourself. You might say, “We need to change the world!” But my son would say, “I have to live in this world. Good luck with world-changing, but please let me live in this world MY way.”

    • January 6, 2012 at 3:49 pm

      @Larkin, thank you for your comment here. I hope you’ll understand if I take exception to your statements here in the spirit of impassioned debate. I agree self-advocates generally have the best interests of themselves and their immediate peer group in mind, and I’m not ruling out that they have the larger ASD/Aspergers population in mind. And I believe you truly want the best for anyone on the spectrum.

      But I continue to be frustrated by self-advocates’ insistence that the ONLY acceptable residential setting is an individual’s own apartment or home. And defending that argument by twisting the intent of the Olmstead v. L.C. ruling is not only wrong, it’s harmful.

      Self-advocates, Medicaid and the P&A Network continue to confuse setting with living situation to the detriment of a huge segment of the population they profess to try to help. A person living in their own apartment dependent on direct care staff for daily living support, or a person living in a group home dependent upon a manager to leave the residence is living an institution-like life. Self advocates continue to maintain that segregated, congregate communities are hotbeds of abuse, yet fail to admit that one-on-one abuse in a private apartment or home is far more probable when no one is around to observe. Do a search of the New York Times for group home abuse.

      Now before any group home operators start to froth, I personally believe most operators do a terrific job and most direct care staff sincerely want to help the people they serve (and they are woefully underpaid for doing so). As with anything else, there will be a few bad people. But the physical structure has NOTHING to do with prevalence of abuse. How a program, facility, or activity is set up, managed and monitored has EVERYTHING to do with the success and desirability of each.

      Independent living and gainful employment, and rich and fulfilling social lives, can occur in ANY setting. And there are many successful congregate settings today, with many more disability-specific settings on the drawing board. Self advocate efforts to block funding and impede creation of settings they don’t desire for THEMSELVES harm others.

      You used the words “…in the place I choose to live. I want no less for your child.” We all want you to have CHOICE. What we want back is for you to let others define CHOICE for themselves and stop imposing your own agenda on others you don’t represent.

  16. cathy
    January 5, 2012 at 8:10 pm

    what a beautiful post. thank you for changing the way people view the fly over population. it’s a message that needs to be heard. good luck with your endeavors. i love that sweet pic of you and your daughter. it’s beautiful.

    • January 6, 2012 at 3:50 pm

      @cathy…you’re a sweetheart for your kind words. I’m glad the message spoke to you. Pass it on!

  17. January 5, 2012 at 9:04 pm

    Mark, thank you for speaking out. I absolutely agree with you that adults with ASD will need many choices…and the choices must belong to these adults and their families. Even for those who are higher-functioning or diagnosed with Asperger Syndrome, there isn’t a ‘one size fits all’ living solution. My son is at nonPareil Institute (www.npitx.org) in Texas, where I’m a full-time volunteer. Some nonPareil students and employees with ASD live completely independently. Some live in apartments with a little help from mom and dad or caregivers. And others are still living with mom and dad and looking forward to a planned community someday. We are going to need a lot of options, and we are going to need the flexibility to allow adults with ASD to live the way they want to live.

    • January 6, 2012 at 3:54 pm

      @Vicki Hill…there are a lot of great settings in Texas as I am coming to find out in my research. It is all about CHOICE. There are some incredibly inspired settings operating successfully today, and many more on drawing boards. And yet I still fear we can’t design, fund and build them fast enough to meet the need coming down the road. We need many more selfless parents such as yourself. Thanks for sharing your story.

  18. Angie Norheim
    January 7, 2012 at 7:11 pm

    I’m autistic&an Aspie myself and I’m informed I have some autism affects. I’m bullied ALL THE TIME, I’m overqualified, underpaid and bullied at my current job, which I hate (only there because of paycheck, worst reason! when I get an outside job I’m leaving my current one) I get LESS THAN HALF of minimum wage and I barely scraped $2150 in 2011… I was laid off 3 times from current employer. I asked why and they said it’s a “funding mix up” and not a layoff. I told my case managers as long I’m w/o work, w/o a paycheck I’m laid off.. I’m desperate for them to tell me they can’t afford me! That’s fine, just tell me, just don’t lay me off 3 times in 1 year)! I made closer to $4300 in 2010. I regret when I do have to go to work, employer has me working 3 days a week, lucky to get 15-20 hours each week. So to compromise, I take shorter lunches.

    It takes me twice as long to get jobs not only because of hiring freezes and economy; but also because of my disability. I maintain competitive employment just lack know-how to resolve conflicts on the job, easily upset when I’m told to do OPPOSITE what my supervisor asks. Voc Rehab is a great resource I’m using to help get to interviews, resolve conflict at the job and how to get recognized and rewarded for my performance and experience.

    My cousin has a son with Apsergers and he understands it better than I do. His son is 10, I was diagnosed in my early 30s and I was on Self Advocates Board of Directors when with previous employer before current one. Board contains disabled individuals with diffrent disabilities who represent diffrent counties in Indiana where I live.

    Finally, I have people who can relate to me&who I can relate easiest with (like my cousin&his son&you) so I can be myself. It’s harder to relate to those w/o disabilities because in my opinion they don’t know what it’s like to have a disability til they have one themselves.

    God bless you!

    • January 11, 2012 at 12:27 pm

      @Angie Norheim. Thank you for sharing your story. Unemployment among adults with Autism and Aspergers is 90% nationwide. The CA Senate Autism Committee has reported that the average annual salary for an adult with ASD who can find work is $4,824. There are some great success stories of ASD persons at work in competitive employment situations such as the Walgreens distribution center in Anderson, SC. Opportunity Village here in Las Vegas has more than 1,800 intellectually and developmentally disabled people at work in our community, although many of them are sub-minimum wage jobs (i.e. FLSA 14c or AbilityOne). Companies such as Aspiritech in Chicago that hire only adults with ASD or Aspergers take the approach to capitalize on the unique abilities of these adults.

      I’m an advocate for creating as much opportunity for competitive employment through reasonable and common-sense enforcement of the ADA, but I also am a huge advocate for work environments created largely or entirely to provide minimum wage or better opportunities for ID/DD/ASD individuals. There are great examples in operation today, such as Brookwood Community (Brookshire, TX) and Erik’s Ranch & Retreats (MN/MT).

      I’m glad Voc Rehab is helping you, but I think the ASD community needs to help itself more by creating workplaces for our adult kids. Have you given thought to what kind of business you might create around your skills and abilities? A venture where you can be your own boss. A friend of mine once asked me why I was waiting around for someone to “give” me a job instead of making a job happen for myself. The next day, I founded LTO Ventures. Good luck to you.

  19. January 8, 2012 at 9:12 am

    I live in NC and in a area where many services are limited. I don’t have a child to call my own with Autism but I work with children with Autism that I feel are like my own. My heart go out to the families and to the children for what the future holds or for lack of what it holds.
    I lived in Las Vegas NV for 5 years and work in the school system there and I have tried to take what I learned there and implement some of it here. Your right in saying there is nothing in place for the families or children after highschool unless they go into what Mark said adult living independently in which some can not do as we know or a group home and this is not a choice it is 2 options which might not fit for the person at all. I have had the opportunity to work with early intervention and it has come a long way but what about people who didn’t have this available at the time or a late diagonis? I left the school system and now am trying to help families volunteering my time and I have been trying to get a summer program put in place as with the states with no funding as they say for summer schools these children are if not losing some of the things that they worked hard during the school year to do, they also are lacking in schedule and structure as not all parents can provide. We have no rec centers that provide the support for children with disibilities, its a vicious cycle for all. I ran a summer program last summer for 7 children in which I had 21 apply for because it was free and we all work by volunteering and i had to fund raise to get the money to pay for the facility I could only take 7, it was great for the children and the families but not it is hard to find volunteers again and finding money is harder so Mark if you could share with me I will give you my email and I would love to see how you put your program together.
    My heart and soul is in Autism and the families and children to help make life better for all.
    Thanks I think its nice to be able to learn and share with other we can only learn for all the info .
    Denice Lapointe

    • January 11, 2012 at 12:35 pm

      @Denice Lapointe. You did reach me separetly and I look forward to our call this week. You are already making a big contribution through your volunteer efforts and I hope you’re able to draw in others to help through your example. We cannot wait for state or federal funding that simply doesn’t exist. My daughter and I are fortunate to live in Clark County School District that has four special needs schools, one of which she attends. Her school has 43 job sampling programs. We live in Henderson and the City of Henderson does an exceptional job in providing a Therapeutic Recreation program that is high quality and affordable. but I think we are the exception nationally. As parents and concerned adults we cannot wait for government to tackle these issues and solve these problems.

  20. January 9, 2012 at 10:02 am

    I agree. I own a business in St. Louis for young adults with transitional needs. Funding stops at 18, and we typically get involved after 18. I see many kids with great capabilities sitting in their parents basements playing video games, period. Few if any friends, no direction, and not a clue about how to move on…. They were passed through the education system because they were high level enough…but with executive function issues along with many others…there they sit. All the media attention has been wonderful for the diagnosis of Autism in general, and yes, early intervention is ideal, but what about thousands out there who never received early, rather ANY intervention? They too, have a life ahead…and its certainly more than sitting in their parent’s basement!

    • January 11, 2012 at 12:42 pm

      @Renau Bozarth. Thank you for your comment. It will take forward-thinking, innovative entrepreneurs to pick up where state and federal programs end. There are lots of examples of businesses started by caring parents to help kids and adults with Autism. The Vocational & Life Skills Academy of the Southwest Autism Research & Resource Center (SARRC) in Phoenix, AZ is a great example. The Trellis Center in Portland, OR. Autism’s Roses in Hartford, CT. We need many more and it’s people like you who are part of the effort to make that happen. Best of luck to you.

  21. January 10, 2012 at 12:39 pm

    Those that I call the “touchy-feelies” rule for all, as you say–eliminating any chance for our very individual kids to receive the help that family and parents know much more about. How selfish of these detached groups! What is it that they (the touchies) really gaining, in their misguided efforts? So very aggravating.

  22. January 11, 2012 at 1:01 pm

    @Shirley Berryhill. I don’t believe that anyone on the Spectrum or associated with the autism community consciously seeks to inhibit others in order to advance themselves. We all are working hard to raise money, expand services, build homes, and create jobs for everyone on the Spectrum. As we try to educate the general public to achieve greater understanding, it’s natural for NTs to gravitate toward Aspergers adults who can express themselves or towards young kids. The challenge that so many others experience daily (including my daughter and me) is the huge rest of the ASD population.

    For example, when I used to take my daughter to a fast-food place with a play structure, she loved playing with the other kids, although not really the way they organized their play. She had a tendency to get too close, or to laugh at the other kids’ behaviors in a way they perceived as inappropriate. The reactions she encountered ranged from just ignoring her, to puzzlement, to cruel comments. Their disconnected parents were of no help. But every once and a while, she’d encounter an enlightened little boy or girl who loved her smile and saw something in my daughter they liked. They would invite her to play and come to me or their parent to get an explanation of why she wouldn’t speak back to them. We used those moments to explain what autism was, and that she had never spoken, and to teach the kids a few American Sign Language words like “friend,” “play,” and “gentle” so they could communicate with her.

  23. January 17, 2012 at 12:28 am

    FAP9 Friend of Autsitic People , is a fouding member of ACAA ( Agricutltural Communities for Adults with Autism). We are one of the members listed on the website.

    Thanks for mentioning it so others can learn about it. We will have a conference summit in May.

    We are looking for land donation or sale at a reasonable price. Perhaps menitninig it on thei blog will help find someone who has 20 to 25 or more usable land in Fairfield County, cT.

    Thanks ,

  24. Crimson Wife
    January 21, 2012 at 3:53 pm

    Hi, I am the parent of a child diagnosed with high-functioning autism and I came to your blog after seeing you quoted in the New York Times as saying that you believe resources for autistic children should be focused on those who are lower-functioning. Is that an accurate statement of your beliefs? (I have to ask because the NYT is notorious for misrepresenting folks’ actual POV)

    If that is your position, I hate to say this, but the evidence is clear that higher-functioning kids with ASD actually are the ones who have the best outcomes from ABA and other expensive treatments. If there is to be rationing, those children expected to get the most out of the treatments should have priority. If a school district only has $X for ABA, speech therapy, OT, and so on, is it a better use of that money to spend it on the low-functioning teenager or the high-functioning preschooler? From an objective standpoint, the answer has to be the latter.

    As a parent, I know your concern is what is best for your child. I understand where you are coming from, but I’ve got to disagree with your position.

    • January 22, 2012 at 11:31 am

      @Crimson Wife. Thank you for asking. I can understand how the NYT story might read that way, but the reporter did not intend it nor is it my position. My position in this blog post, my business and my personal life is that we need MORE and BETTER resources and services for all persons on the spectrum, more funding for affected persons and their families to pay for these services, and easier access to those funds, resources and services. If a more precise definition of Aspergers, classic autism and PDD-NOS enables this and does not cut out any affected persons, then I believe that’s a good thing.

      With all due respect, I have to disagree with your position. I cannot support the notion that some people on the spectrum are more deserving and have more right to services than others. It’s not an objective standpoint, it’s discriminatory. It suggests one element of the affected population has greater (or lesser) value than others. All affected individuals have the same value and the same rights. If resources are limited, then I argue that a more precise definition of the disability and a more precise matching of resources and services to that level of disability and the needs of that person is what we need to be advocating.

      My Autism Speaks blog post above unequivocably supports everything that benefits HFA and Aspergers individuals, and that helps younger kids on the spectrum get the early intervention services and therapies they need. The main point is that we not lose sight of the enormous bulk of the autism population that cannot speak for themselves and that are past the point of early diagnosis and intervention. Thank you for your comment.

  25. Jarron
    January 22, 2012 at 12:20 am

    I read this post and walk away feeling disappointed to say the least. I am an adult with Aspberger’s Syndrome. For the most part, I have felt as though my life with this disorder is in the “flyover” territory to which you refer. As a child, life was not easy for me nor was it for my mother. Autism meant rocking and nonverbal and Rain Man so if you did not fit into that mold, you were weird or dumb or crazy. That is how I lived my life. I hated being touched so I must have been sexually abused. I hated loud noises and crowds of people so I was anti-social. It goes on and on. I was a “genius child” one year and could not pass classes the next. We all have our own walks through life. My trips to the playland was more akin to your daughter’s even though I could speak. In fact, if anything, it is a double edged sword to be on a higher functioning level. A lot people find “Aspies” to be weirdos with some fake disorder because of that.

    • January 23, 2012 at 1:29 pm

      @Jarron, thank you for sharing your story. I’m not sure why you would feel disappointed. If you feel you’re part of the “fly-over” group, then you too would want more and better services and a more benevolent societal understanding of your unique qualities to help you live the life you want to live. My point is not to take anything away from anyone. On the contrary, my point is additive. Again, thank you for taking the time to add your comment to this discussion.

  26. Garkis
    January 22, 2012 at 4:05 pm

    I am a high functioning autistic person. I am not one who is danger of suddenly being viewed as not autistic because the degree of functioning I have now was acquired of my lifespan and I was diagnosable under the criteria that existed in the early 70s.

    Like the previous poster I came because of how your opinion was expressed in the New York Times article. While appreciating that treatment dollars are limited seeing the higher functioning as somehow being a threat to the lower functioning because of that is a bit or an error of logic for several reasons.

    First as the previous poster mentioned outcomes are better when that intensive treatment is applied to the higher functioning in the first place. That doesn’t make the lower functioning less deserving or needing of treatment but it should be the next logical step that if with that treatment you turn a percentage of the highly functioning into tax payers there would be more money over all available so ultimately less competition for funding.

    Based on what you have said in your responses here I don’t think your views are actually quite as they are portrayed but I do know a lot of people have ones like what was printed.

    There are a lot of high functioning individuals with autism who as a result of being high functioning and adult get no formal support at all. Being high functioning and autistic does not as seems to be the working hypothesis of those making the decisions mean you are actually a high functioning adult.

    I, and most of the people like me live lives where all our energy goes into coping with issues in daily life that the neurologically typical don’t even give a second thought. There is nothing left for achieving whatever occupational functioning our other abilities may have made possible. I live a very small life. I can accept that it is nothing like the life I would have had were I not autistic but I find it harder to accept that it is also nothing like the one I could have if I only had a tiny bit of support in the areas by definition I fail at.

    The difference between high and low functioning often comes down to not the degree of impairment the actual autism symptoms cause but the degree of other cognitive challenges. This should be fairly obvious but two equally autistic people will be treated fairly differently depending on what the current IQ cut off for services is in their area. That means ultimately it isn’t autism that gets treated in many places but a failure to score high enough on tests of intelligence and that really makes a mess out of how autism is defined and treated.

    That my intelligence isn’t measurable on standard tests doesn’t make me less autistic. It doesn’t even mean I function better in the areas that strictly have to do with my autism. If people saw how I actually have to live they would wonder why it is regarded as high functioning.

    The real issue with the criteria that we have now isn’t with the actual criteria but with the fact that many clinicians ignored the important bit about “The disturbance causes
    clinically significant impairments in social, occupational, or other
    important areas of functioning.” I have felt that it is hurt a person like me of above average intelligence but huge impairment in functioning that to a larger and larger degree what it means to be at this end of the spectrum has been defined by some people who don’t technically meet that requirement. While it is painful if your family thinks you have no potential to achieve anything at all it is equally as bad if as a result of watching some movie or reading some book they conclude the real issue isn’t your autism but your lack of willingness to simply apply yourself to the things so and so was able to do.

    Autism is lifelong. There needs to be some recognition of that and support for people at all points of that spectrum and to make that feasible of course a stricter adherence to however it is currently being defined does need to happen. That shouldn’t have to happen at the cost of whatever help a subset of the autistic population does have.

    • January 23, 2012 at 1:42 pm

      @Garkis…great comment and very enlightening. My position is that we need more and better services and supports for everyone on the spectrum, more money to pay for those services and supports, and easier access to all of it. If money and resources are less than 100% of what is needed (as probably always will be) then better diagnoses and more appropriate services and supports would help more people. I think I am reading in your comments that you agree that better diagnostic tools, better measurement and evaluation criteria, and better services and supports are needed. I’m not a fan of DSM-V as proposed if anyone on the spectrum loses services.

  27. January 22, 2012 at 6:53 pm

    I’m disheartened by some of the responses which is the who’s higher functioning, who deserves a shot at a better life, who doesn’t…As a mom of a “Fly-Over” child that is soon to be 22, I’ve been in the trenches with my eyes wide open for 20 yrs. I’ve been observing the outcomes of the many children I met when they were 2-4 years old, now all young adults. I’ve also visited group homes, state facilities, etc., over the years so I can learn as much as I can about ASD. My observation is that the adult outcome is not very predictable. The bottom-line is, without reasonably acceptable behaviors, the outcomes are not always good. These children all do eventually grow-up, that is the reality. An adult that is hitting, spitting or displaying self-injurious behaviors is not the same as a child doing the same. Society is forgiving of a child, unforgiving of an adult. Life continues for persons with autism after 18, and what is considered “high functioning” at 7 isn’t the same at 22. There is a profound, undeniable social stigma and severe limitations imposed on an adult that displays unacceptable social behaviors. In adulthood, nobody cares if they were able to do algebra in 1st grade and recite every nursery rhyme they ever heard. Socially acceptable behaviors is much more prevalent in determining the “best outcome.” In my humble opinion, a “best outcome” is described as an adult that is able to live a rich, full life; fully part of their families and communities in spite of their challenges. Every child should receive all the services they need in school to help them eventually live the best life they can possible have in adulthood….period.

    • January 23, 2012 at 1:43 pm

      @Michelle. Amen.

    • Garkis
      January 23, 2012 at 1:57 pm

      It’s certainly true you can’t tell with any great certainty who is going to be high functioning later in life. As a child I was for a time thought to be retarded. At some point there are some indicators though not necessarily in the beloved early intervention framework.

      The problem as it stands now is that treatment is already rationed. If you are an adult and you have at least normal intelligence there are very few places where you will get any help at all. That means autistic adults in that situation never come close to leading the sort of lives they could have had and many wind up battling depression.

      Everyone deserves the best shot at life they can but there are certainly times where the greatest quantity of resources, both time and money wind up directed at one subgroup while the rest are left to struggle on their own. This has to change.

  28. Linda
    January 23, 2012 at 7:48 am

    I too came via the NYT. With respect Crimson Wife, I see a flaw in your logic. If it were fundng for ABA, true, best to direct that at children who can most benefit. But for low functioning teenagers, ABA might not be the best benefit to their lives…they might need other things such as transitional preparation. It sounds like you are suggesting rationing care and not “treating” one “illness” for another. Isn’t that like not saving funds to treat or give services to those immobilised in wheelchairs with MS because one particular treatment…a medication..works best on those still ambulatory?

    • Crimson Wife
      January 27, 2012 at 11:14 pm

      Rationing is happening because resources are not unlimited. ABA is extraordinarily expensive, but because it is seen as the “gold standard” in autism treatment, that is what gets written into IEP’s and IFSP’s for all children with ASD. As a result, costs have been exploding, and now we are getting this rationing by changing the diagnostic criteria to exclude those on the spectrum who are higher-functioning. This makes no sense to me, because that would exclude from treatment those whom the evidence shows are most likely to benefit from it.

  29. January 23, 2012 at 12:10 pm

    Well said. It really is about finding what works to allow young adults and beyond to be able to function in society at their optimal levels in all social and life arenas. There is no one approach that works; we need to understand the person first; what makes them unique, what their best attributes are, and work from there. As adults functioning in the real world, the longer their negative attributes are allowed to “play out”, the more routinized they become. They also begin to respond much differently to the consequence of the outside world, further impacting self confidence, and ability to be successful. All kids need assistance…but we need not stop the process when it begins to matter the most! And that is living in the real world!

  30. January 23, 2012 at 2:28 pm

    Well, its funny. In the end, autism is autism, whether its high, or low functioning.. it is autism.. Cancer is cancer… there are no “worse” cancers, or “better” cancer.. its just that, cancer. Different interventions work for different children. Every autistic individual is unique in their own way, and should be treated as such. Wrap around, early intervention, speech and OT helped us.. helped US.. Our childs’ brain responded to that particularly set of interventions. What WE did may not work for others. We should not begin to definitively state, nor believe we know for a fact that any therapies/treatment will work 100%. There are too many variables and idiosyncrasies in the human mind to categorize a “cure for all,” be it ABA, gluten free, drugs, wrap around, special ed, whatever. It boils down to what works for you. Everyone should be allowed the right and dignity to follow whichever path of help works for them, without condemnation. What we want the outcome to be, how we define success, in the end, is up to ourselves. Society and money should NEVER dictate the type of treatment available to autistic individuals, whether they are high functioning or not.

    • January 24, 2012 at 2:05 pm

      @SPD MOM…it’s great to hear that your efforts have had success. Thank you for sharing your thoughts. An interesting question bouncing around some of the people I interact with is why psychiatrists have the power and authority to set the criteria for Aspergers, autism and PDD-NOS diagnoses in the first place. If anyone reading this knows the answer, please share.

      • Garkis
        January 24, 2012 at 3:19 pm

        SPD MOM :
        Well, its funny. In the end, autism is autism, whether its high, or low functioning.. it is autism.. C.

        That’s precisely true and I wish it wasn’t so hard for people to keep sight of that.

  31. Brooke
    January 23, 2012 at 7:05 pm

    Hi Mark.
    Have you looked into research by Dr. Robert Mellilo? His book is called Disconnected Kids. Because my husband is opening a Brain Balance Center in South Jersey, I am getting articles sent to me. The NY Times articles mentioned your blog, and with a click, I was here. There are tips in the book, and this may be for children with milder cases of autism. By the way, I have no benefit from the book purchase, etc. I am merely searching for information and trying to be helpful. Thanks for all you do.
    Best,
    Brooke

    • January 24, 2012 at 2:10 pm

      @Brooke, I have heard of Dr. Mellilo, but not researched him. A couple of friends of mine are checking out the Brain Balance Center here in Las Vegas. Good luck with your husband’s opening. Thanks for the recommendation, and your kind words.

  1. January 4, 2012 at 6:29 pm
  2. January 5, 2012 at 12:44 pm
  3. January 13, 2012 at 1:01 am
  4. January 24, 2012 at 6:25 pm
  5. February 17, 2012 at 3:25 pm

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