Posts in category: » Education

Hodge Podge #1

Written in 10-3-2010 by Melody | No Comments

Three things have happened in the Autism world. Parenthood started airing on NBC last week. Last night was the second episode. The episodes are also available to watch online if you’re like me and don’t want to admit you’ve watched it. One of the three families has a son that was diagnosed with Asperger’s in the first episode. A lot of parents of Asperger’s kids said they really identified with the parents. What became apparent was that Asperger’s children are still seen as not having acceptable ‘behaviors’ to stay in their placement. The boy was being kicked out of a private school in the same episode. Just another place where Asperger’s is not accepted and accommodated.

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Next up is the character known as Michael E Robinson, Jr. (link to original article) He is an acquaintance and all of his ‘facts’ are what he professes to be true. As you take a look at the article, the fact checking shows that most if not all his facts to be false. He has great zeal and passion about what he’s doing. The problem is, he has been alleged to have scammed money from parents, taking others work as his own, and tends to over-embellish his abilities. His numerous claims identifying him as an ally to the Neurodiversity community are false.

It does leave the question, why would he do such things?

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Lastly, Autism Speaks has nominated John Elder Robison to their Scientific Advisory Board. J.E. Robison is most famous for writing the memoir Look Me In The Eye: My Life with Asperger’s. On the surface, this looks promising. Autism Speaks is finally accepting a person with an Autism Spectrum Disorder into their community.

But what looks good on the surface is not so widely accepted by the Neurodiversity community at large. Mr. Robison states in his acceptance:

Research into causes of autism is important, but I want to see more research aimed at remediation of specific components of autistic disability.

While he sees remediation as a goal, the troubling part is that he wants to still research in causation. The subject has been rehashed again and again. The only true reason to research causation is to find a cure. A cure many do not want for themselves.

To go on, this is just one appointment. The Scientific Advisory Committee has 30 members. He can make an impact in the committee. Perhaps another 5% of research grants will go to Quality of Life research. This does not help their Awareness campaigns that show Autistics to be trapped and hopeless. They do not preach Acceptance. If they did, more than just one Autistic person would have been nominated. They continue to take desperately needed donations out of the communities. What little they do for the Adult Autistic community is hold online “townhalls” that cost $100s to get into which circumvents most Autistic Adults attendance!

This is very displeasing to many. To try to work from within is a noble cause, Mr. John Elder Robison, but the naivety that just one man can change the whole of a community so rooted in fear, anger, deceit and hate could be damaging for us all.

DSM-V: The New Frontier

Written in 10-2-2010 by Melody | No Comments

Typewriter

As most are aware now, DSM-V proposed changes were released today. I’ve had a chance to look over the criteria changes for Autism Spectrum Disorder.

Autism Spectrum Disorder

Must meet criteria 1, 2, and 3:

1. Clinically significant, persistent deficits in social communication and interactions, as manifest by all of the following:

    a. Marked deficits in nonverbal and verbal communication used for social interaction:
    b. Lack of social reciprocity;
    c. Failure to develop and maintain peer relationships appropriate to developmental level

2. Restricted, repetitive patterns of behavior, interests, and activities, as manifested by at least TWO of the following:

    a. Stereotyped motor or verbal behaviors, or unusual sensory behaviors
    b. Excessive adherence to routines and ritualized patterns of behavior
    c. Restricted, fixated interests

3. Symptoms must be present in early childhood (but may not become fully manifest until social demands exceed limited capacities)

I look at this from both an adult stand point and a parent stand point. My primary concern is with Criteria 1b. Social reciprocity can often be for children not noticeable until later in years. This can possibly lead to a lower rate of diagnosis in those children in the early years. I suspect though, that most children that don’t show the difference are probably not diagnosed until later at this point anyways.

But as an adult, I know the rules of social reciprocity. If someone does something nice for me, I must do something back. If someone compliments me, I should also compliment them. I can perform these responses. Whether or not they are learned or out of genuine feelings is where the problem lies. As an adult that didn’t get diagnosed until I was an adult, I can see where other adults that may seek a diagnosis would fall through the cracks on this one. Many of us have learned and adapted our skills, but still have other areas of concern.

I can honestly say I have a hard time making and keeping friends. Only those that have stuck by me out of sheer determination from their point of view are the ones I keep. When I try to keep track of friendships, I ultimately fail. And again with the 1a, I know there are times when I miss nonverbal cues. It’s the idea that you have to meet all 3 that is troubling to me. Especially since it’s all speculation on the part of the diagnosing party whether this is a learned response or a genuine feeling.

However, I am very happy to see the addition of Sensory behaviors added. My youngest certainly doesn’t do any of the stereotyped behaviors any more, but has more than enough sensory behaviors to make up for it. This addition I think will help a lot of parents that are on the fence. Not seeing the spinning or flapping hands no longer means that you ‘might’ have a child with Autism.

Explaining. Perception.

Written in 6-2-2010 by Melody | 3 Comments

Today, I came across a casualty of ‘Autism is evil.’ campaigns. My oldest, who is more affected by Autism, was invited to a birthday party of his classmates. It’s a huge step forward that parents and kids alike are able to invite him knowing his differences. He even was withdrawn, sprawling and very noticeably upset within 5 minutes of coming in, but my little guy just wanted to stay. We stayed.

Parents avoided our gaze, for the most part. Not those that have come to know our family, but some of the others. I tried to keep him away from others because he was flailing and I didn’t want anyone, including him, to get hurt. Every so often, he would rejoin his classmates/friends for a little while.

The older brother of the birthday girl (here forward pseudonym ‘John’ will be used) was very interested and kept trying to talk to myself and my kiddo. He reassured me. He reassured my boy. After a little while, I decided to go ahead and tell him that Daniel has Autism. We haven’t put a word to it with the boys yet because within our household, they are pretty ‘typical’. John said in an instant, ‘I thought so after he came inside the house.’

John went on to explain the horrible things that Autism does. He was describing a boy he knew at school. And by the sounds of it, the boy he was describing was non-verbal and possibly violent. He didn’t seem to feel the same way about his classmate as he did about my son. After a little while, I told him I have a lot of the same problems, but with age have overcome them.

He was instantly confused, I think. He started asking me questions about how I overcame it. What was it like to be Autistic? How did you overcome it? I tried to explain that large crowds still are difficult, and that for some issues I have to take medicine. But this little boy, no older than 11-12, had never heard of being able to help some of the disabling aspects of Autism. In an instant explaining I had Autistic characteristics, it was like his world changed. I was there, with my Autistic son, being Autistic myself.

The part about this that is most complicated, how do we change the perception of these kids? When adults, parents, are showing them the ‘bad’ parts of Autism, that is what they’re learning. We may be combating the parents, but I think we also need to help these NT kids understand Autism isn’t a bad thing. We will be fighting against this message for generations to come because they don’t hear anything else.

Support Groups, Meetups, and Social Gatherings

Written in 29-1-2010 by Melody | 2 Comments

Last night, I decided to go to an Asperger’s support group. It’s for both adults with and parents of. I was 5 minutes late because we had quite the rain last night, as such, traffic was bad coming home after picking my husband up from work. But I went nonetheless.

I’ve gone to another group that I don’t feel really meets my needs. I continue to go to it, because I feel like some of the younger Aspies could use a role model, even if I’m female. But last night was different. The adults with that were there were mostly my functioning level. Though, I can tell that their major perservation is not the study of ASDs.

One of my biggest ‘obsessions’ is definitely studying ASDs, both for kids with any form of Autism and adults who are more independent. I was responding to everyone’s concerns with my thoughts and ideas. And as I explained more and more, I was drawing more attention on myself. Finally, a ‘mother of’ looked at me and asked who I was and why I was there. It was pretty scary. While I didn’t mind the attention when I was responding, the thought of having to explain myself, even for a good reason, was petrifying.

I think I looked like a typical Aspie last night. I tend to not in day to day things, but when you get me in large groups like that, I don’t exactly know what to do. So I was sitting on the floor (all the chairs and couches were taken), not making eye contact, or even face contact, rocking back and forth, and writhing my hands. When I went to speak, I did so in a stutter until I knew it was truly my turn to speak.

I plan on creating (and have a meeting to discuss this tomorrow) a meetup for ASD adults. Nothing as formal as last evening. Definitely not like the other group. But just something to get together and talk or eat or play games. I don’t have the energy to create something that was structured like last night. The event alone was overwhelming and I had to take a good 15 min after it ended to calm down enough to drive in the car.

It’s also something I’ve been working on in therapy. I was to be able to push those boundaries. Where I’m comfortable without feeling so tense. Do any of you have any tips on how you get through those events?

I will say, out of all the ‘adults with’, I was the only one that expressed having children. Quite a few expressed not being in relationships. And others were working or attempting to find a job which seemed to mean they weren’t looking for a relationship. There was a couple there with one partner that is AS. It seemed to be fairly distributed independence levels.

The Floortime Approach

Written in 5-1-2010 by Melody | No Comments

We are looking into starting a floortime/DIR approach with both of our boys. I have been thinking about it and feel this is the best way for our family. But as I look more into it, the more I realize the approach may be just as much for me as it is the boys.

As I think about it, I wonder how well this approach would work for ASD parents of NT kids as well. The fundamentals are getting down on the child’s level to get meaningful interaction. I’ve been told that this modality will be difficult for me because I inherently, through my Asperger’s, have a hard time with interaction. While I don’t agree that all people with Asperger’s have this problem, I do know my playskills are quite limited. I never did much typical play as a child.

Could this be a way to help an Autistic adult learn to give the interaction many children crave? I’m not talking about all adults, but those who want to learn, it seems like a viable outlet. I will think on this more, but wanted to put my musings out there.

Ari Ne’eman nominated for National Council on Disability

Written in 21-12-2009 by Melody | One Comment

FOR IMMEDIATE RELEASE

December 16, 2009

President Obama Announces More Key Administration Posts

WASHINGTON – Today, President Barack Obama announced his intent to nominate the following individuals to key administration posts:

*         Jonathan M. Young, Chair, National Council on Disability

*         Carol Jean Reynolds, Member, National Council on Disability

*         Fernando Torres-Gil, Member, National Council on Disability

*         Chester Alonzo Finn, Member, National Council on Disability

*         Gary Blumenthal, Member, National Council on Disability

*         Sara Gelser, Member, National Council on Disability

*         Ari Ne’eman, Member, National Council on Disability

*         Dongwoo Joseph “Joe” Pak, Member, National Council on Disability

President Obama said, “I am grateful that these fine individuals have chosen to serve in my administration. They will bring a depth of experience and valued perspective to their roles, and I look forward to working with them in the months and years ahead.”

I want to first congratulate everyone who is being nominated.  I’m sure you’ll represent your communities well, and our nation well.

Ari Ne’eman, Nominee for Member, National Council on Disability

Ari Ne’eman is the Founding President of the Autistic Self-Advocacy Network, where he initiates and directs efforts to increase the representation of autistic individuals in public policy discussions.  He is a leading advocate in the neurodiversity movement, frequently briefing policymakers and speaking publicly on disability and autism policy issues. Mr. Ne’eman also serves as Vice Chair of the New Jersey Adults with Autism Task Force, where he represents autistic adults in reviewing the state’s autism services.  He also previously served on the New Jersey’s Special Education Review Commission, where he authored a minority report on the topic of aversives, restraint and seclusion.  Mr. Ne’eman previously served as the Policy Workgroup Leader for the Youth Advisory Council to the National Council on Disability. He is a board member of TASH and the Autism National Committee. In 2008, he received the HSC Foundation “Advocates in Disability” Award. Mr. Ne’eman is currently an undergraduate at the University of Maryland-Baltimore County where he  studies political science and expects to graduate in May 2010.  In 2000, Mr. Ne’eman was diagnosed with Asperger’s Syndrome, an autism spectrum disorder.

My extra congratulations go out to Ari Ne’eman. I first got to know Ari earlier this year. He is a tender voice for our community, but also quite outspoken. I think his ideals with regard to where national policy is with respect to the Autistic community at large are spot on.  In my honest, and humble opinion, he more than deserves this spot. I’m sure there is a bright political career in front of Ari.

You can read some of what Ari has done above, and there is even more at ASANs website, link on the left column.  Today though, for those that live in the United States, I’d like you all to take the time to email your Senators on behalf of Ari.  The following is what I have sent to my two US Senators.

I’d like to encourage you to confirm President Obama’s nomination of Ari Ne’eman to the National Council on Disability. I am a 27 yr old mother who has been diagnosed with Asperger’s Syndrome. As well, I have two small children ages 4 and 5 who also have Autism Spectrum Disorders.

I have grown to know Mr. Ne’eman over this past year and find his character to be quite sound. He truly has the best interest of all people with Autism Spectrum Disorders, adults and children alike. He would be a valuable resource for all in this position.

Thank you very much for your time. I hope we can count on you to confirm this position.

Sincerely,

Melody Latimer

Obviously, mine is a little more personalized as I have enjoyed the company of Ari and the other ASAN leaders via their listserv, but Ari truly is one of the ‘good guys’ in the Autism spotlight. Feel free to comment or email me privately if you’d like to know more about Ari’s record or ASAN.

ASD Adults Living in England

Written in 24-9-2009 by Melody | No Comments

Source: NHS Information Centre

Using the recommended threshold of a score of 10 or more on the Autism Diagnostic Observation Schedule, 1.0 percent of the adult population had ASD. Published childhood population studies show the prevalence rate among children is also approximately 1.0 percent.

This is the most important part of the information published. The implications of this study are far-reaching.  I’d like to look at a few of them in a bit of detail.  Subjects such as services, vaccinations, genetics and sociology come to mind. I hate to start with the subject of vaccinations and biomedical theories, but it is a very important subject matter.

I have faced many parents who have adamantly said I must not have Autism for one, and for two that their children are suffering from toxicity. I’m sure others have as well. This study clearly shows that the rate is the same across the board. Since vaccinations have only recently (past 20 years) been so widely used, there should be an increase in the rate.

I must say though, that the vaccine implications pale in comparison to needed services. This shows we are not getting much support, at least in the UK, and I believe not in the US either. We need more support to get it through college, as the amount of education is low. We need support in relationships, or else, the rate of being single wouldn’t be so low. Job placement assistance, financial planning, so on so forth. I read somewhere after this, “If the rate is so high, then why do they continue to live?” Basically using survival of the fittest and natural selection as a means to try to explain how there is still a high rate of autism. The fact remains that we are, for lack of a better term, mating and reproducing. I’d much rather a world where my kids can get assistance, if they need it, than to live alone, with no education, and a low paying job.

Which brings me to the sociology of all this. If there is such a high rate of adults who have the most part went undiagnosed, what does that mean of our impact on society? Are we being accepted or cornered into a homes? Is there adequate means to promote social awareness for not just the children, but adults as well? Social awareness should really be a two way street. We have all adapted quite a bit over our life times to be where we’re at today. I would like to see more socially aware peers. I feel like I probably go overboard telling others of Autism just so I know there is awareness. If I don’t say something, who will?

I hope this all has given you something to think about. Hopefully we will see more studies like this to come out.

Heart of the Matter

Written in 9-9-2009 by Melody | 2 Comments

King charles spaniel

Okay. That title seems a bit strange to me, but it really seems to describe how I feel today, this week.

My oldest, more affected, son started Kindergarten this school year. We’re in the middle of week #3 and I’m wondering how NT parents do this. And when I say ‘this’, I’m not talking about parenting, or raising a child with Autism, but how they deal with school personnel.

I’m happy to announce that I’ve joined both my boys’ schools’ PTAs. I’m even being named the VP chair of one committee for one school. I’ve done what I can to get awareness out about Autism, not only in my kids, but myself. I’ve started really pushing my therapy goals, especially those of not being stepped on. I’ve even gone to some Asperger’s adults’ Support Groups, though didn’t find them terribly fulfilling.

This week though, I’ve been thrown a curve ball. Despite all I’m doing to be involved, all my attempts at awareness, everything I’ve done for myself and my kids, my son is regressing. First two weeks of school, he had some issues with transitions. Not a big deal, we all expected it. He was assigned an aide even to help him with this. This week? His transitions have gotten much worse. He has been punished two days in a row by removal of his recess time. He’s been running away from his aide, teacher, and other personnel.

I’m doing what I can. I wanted to shadow him tomorrow, but that attempt is being thwarted by my own mother. I’m getting his IEP tomorrow so I can go over the specifics of it. I have told his SpEd teacher, who doesn’t have any control over the majority of his day, that we need to do a FBA (functional behavior assessment) so that they can put a BIP (behavior intervention plan) in place. Though, I don’t think she 100% agrees with me that this is needed. This is not the only thing that’s happened to him. He had a bad day last week too, where I was told I should send him with a water bottle because he “kept getting up to get a drink of water.” By the description, I knew he was perservating, not thirsty. I told his teacher, but she still insisted on the water bottle. They didn’t give him his Disney Cars school supplies either, which I told them they needed to as a re-inforcer.

I’ve done what I can to help him to the best of my ability. I’ve tried to be nice, and cordial, and help the school as well. Now I’m going to have to put a foot down because my son will not slip through the cracks. I refuse to let that happen. But how, I ask? How do NT parents do this and not crumble to pieces? When I know so much of what he’s going through? And have given them so much insight? And I do everything for awareness? How is this the end result? Or not the end result, but the beginning result?

This has been a heart breaking week. And we’re only at Wednesday. And we’re not even a month into school. And we are already fighting to help him just stay afloat. It’s a sad day, and the heart of the matter when it comes to all Autistic students. Disabled students. Disabled people. Acceptance, Awareness, and Accessibility.

Growing Up and Letting Go

Written in 3-8-2009 by Melody | No Comments

School bus, rear view

I’ve spoken of change being the Achilles’ Heel of Autism. I’ve spoken of my kids and fighting for their inclusion and school. After all of that, I know what I’m going through is probably pretty typical not just for me, but ANY parent anywhere sending their kids to school. I’m sure my mom felt it several times, with our entrance into school, then middle school, high school and eventually college. It is now my turn to start this journey.

My oldest boy is going to elementary school in a couple of weeks. We’ve beaten the rush to get school supplies. I have gone crazy getting him all Lightning McQueen Cars stuff. I keep thinking the other boys will think he’s the coolest kid with the coolest parents to have gotten him all this stuff. Of course, he doesn’t know about it, or else he’d perservate over it, and half of it would get destroyed before leaving the first day. But that’s really besides the point, right?

Now that I’ve gotten all of that though, I’ve started to think about past that first instant where everyone sees his cool stuff. He loves making friends, but he’s not near their level of communication or social skills. He gets to be in a regular ed class with other kids his age because he is so far ahead academically. I’m going to do everything to make sure he stays ahead in those areas because I know better than most, if you don’t keep and cultivate those skills, they start to suffer. The school is supposed to work with him on his communication, social skills and fine motor skills.

But I can’t help fearing this change. He has 9 weeks to prove himself as belonging in that classroom. The school has said that they are already full, as in, they are taking no more new Kindergarten students. He has not done well there during his ESY term, though I know that’s no indicator as the teachers, pupils and setup will all change. But I’m still very fearful of what’s going to happen to my little man. And will he fall through the cracks like so many of us did? He’s shy, and smart, and keeps it together around most people. Will he make up that gap? And how about lunches away from home? So many things to think about and of course, my anxiety is getting the better of me. But I know I need to for him and me to let him have his chance, let go, and make sure the schools don’t underestimate his skills.

FHC: Carol Kranowitz

Written in 21-7-2009 by Melody | No Comments

Young boy rolling a hoop downhill

I rather apologize for the absence of writing blog posts. I am writing up the other three portions of the conference, but want to make sure I have time to sit down and write from beginning to end without interruption.

Day 1 morning went well as you read. Afternoon? Not so much so. I was rather looking forward to listening to Mrs. Kranowitz as I’m very much a prescribed to Sensory Integration. What I heard was less than I had imagined. That’s putting it lightly. I think my actions during the afternoon best summarizes it. I actually left an hour before she was to be done. I NEVER leave public places like that no matter how upset I get. I rarely even do so to use the bathroom, let alone to come home.

She wasn’t there to teach us about sensory integration as I had assumed from the title of her presentation “The Out of Sync Child”. Instead, she used her 4 hrs lecturing us on getting our children outside more. She used this example.. She had us all think of a great memory from our childhood. She then told us that she guaranteed 95% of us had thought of something outside. Therefore, since our children never go outside, they will not have any good memories about childhood.

She also pulled another percentage out. Suggested, while admitting to having no sources for this, that 99% of all Autistic people have sensory integration. Now, I have no doubt that we all have sensory issues. Every human being has sensory issues. But to go as far to say that all Autistics have SID/SPD is ludicrous!

She also went into biomed information. This is where I got up and walked out. I have had my fill of wood-by “experts” telling me what I should “try” with my kids. I’ve done my research. I know that GFCF has been shown to help kids with gut issues, mine have not. I’ve seen it say the same thing for children who had multiple ear infections, mine did not. I’m not knocking anyone for trying them. I feel everyone can decide for themselves though. Instead, I have a teacher, not even an OT, but a teacher, telling a room of about 1000 adults, mainly professionals, to try diets. I am sorry, but she has no right in her position to do that.

Coming next… Temple Grandin.

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