A month ago we were celebrating the boys’ birthdays. Subsequently, we also had to plan for their yearly IEP meeting. All of those events went well and as planned. Since then though, I have noticed my 5 yr old (the youngest) has become much more impulsive. It’s really been building up. He already has sensory issues, his ASD diagnosis, but it’s becoming ever so clear he is definitely ADHD.

He has no patience. He used to be really good at waiting the 5 minutes for us to stop what we’re doing before attending to his needs. Now he has a hard time waiting more than 30 seconds.  If he doesn’t get what he wants, he lashes out then immediately apologizes. So he knows what he’s doing is wrong, but doesn’t seem to have that process time before he does the action.

So my choices are many. We’re going to implement a ‘Good choices, Bad choices’ system. For every good choice, he gets so many tickets which can be redeemed for things he wants. They use this in the floortime group we have him in and it works for them.  When he makes bad choices, he gets tickets taken away. So he can always do lots of small ‘good choices’ to gain tickets back for a bad choice he did. We need to get a new sensory diet in place as his sensory needs have changed. I really want to try everything before looking up psychiatrists and neurologists to take him to.  We are also thinking about ways to add caffeine to his diet in very small doses. He generally doesn’t like most things with chocolate, won’t drink any drinks that typically have caffeine, so it will be difficult to add it. We’re hoping to see some of his more nervous energy tempered a little. I just don’t want to give him any medication if we don’t have to.

What changes do you think would help? I’m at a loss of where the sensory issues begin and end, where the Autism issues begin and end, and where the ADHD issues begin and end. I can relate to my older son much better because he and I come inward when we get overloaded, but sadly, that is not the case for my younger son.

I recently wrote a blog for Autism Awareness month for the Moms Blog for Dallas Morning News. It was published online today here.

Autism Awareness means…

Autism Awareness means a lot of things to a lot of people. To some, like myself, it is hope for the future. For adults with Autism, awareness brings the chance to spread a message of acceptance, accommodation and accessibility. Our hope for the future is to have the outside world understand ‘our kind.’

I hope this not only for myself, but for my two Autistic children as well. Our family believes in Neurodiversity. Neurodiversity states that neurological conditions are a normal human variation. The abnormal neurology gives each of us areas of strength as well as various difficulties. Those areas of strength and deficit can vary greatly between each individual.

The hard areas that can be, should be treated. Intervention is still one of the best predictors of independence as an adult. What can’t be treated though should be accommodated. Other areas should be accepted. Is the behavior harmful? Does it cause the person great stress? Those are some of the questions we on the spectrum ask parents to think about. The most important aspect though is that we have access to all the things that can help us be meaningful contributors to our communities.

Autistic people from all functioning levels can be helped by the goals of Neurodiversity. Accessibility gained to keep a person in their own home rather than be institutionalized. Accommodations can be made to find employment, much like the programs by Department of Assistive and Rehabilitative Services. Alternative and Augmentative Communication devices would help relate to others their needs. For children, Neurodiversity means equipping their peers with social awareness to prevent bullying and promote acceptance of the unique differences.

All any parent in this world asks for is a happy, healthy child. Proper treatment, awareness, and acceptance can help all parents achieve that. You can start within your own communities, your own schools and playgrounds, or even your own home. Love and compassion begets acceptance. Everything else will start from there.

I hope you all enjoy. Those of you taking a look at my website for the first time, I welcome you.

April is Autism Awareness Month

April in my household means 3 things. It’s the start of the Autism year. It holds both boys’ birthdays. It is the start of Spring. Although, depending on your family history, you may also see it as National Child Abuse Prevention Month, Stress Awareness Month, Alcohol Awareness Month and a host of others. Does anyone else find it odd that Autism Awareness shares a month with the three I’ve listed?

With the fear campaigns that go along with Autism, you’d think they picked it just for the three above. They try to show increase in child abuse in families with Autism because of a ‘lack of services’. They definitely say it’s more stressful to be a parent of an Autistic child. When you mix all of those together, surely you get an increase in Alcoholism.

But I digress.

April 2, 2010: Light It Up Blue

World Autism Awareness Day.Org

“They” will be starting tonight. Across the US, the Light It Up Blue campaign started by Autism Speaks in honor of their World Autism Awareness Day has encouraged major buildings to turn blue for Autism. I know AutSp’s puzzle piece is blue. They have also asked that people wear blue on Friday April 2, 2010 to show their support. To me, this just shows support of AutSp’s mission. I have made sure to tell everyone I know not to wear blue tomorrow.

Instead, a variety of suggestions have been tossed around for those of us that want to show our support to Autistic people (including ourselves). I have chosen to generally ask others to wear a Spectrum shirt, ie something with rainbow colors. I know rainbow usually signifies Gay culture, but it is also a spectrum that signifies the Autism Spectrum. Conversely, you can choose to Infinity Symbol (like above), the Autistic Pride Flame, the “I’m not a Puzzle” shirts, so on and so forth. The key idea is to stay away from puzzle pieces, puzzle ribbons and solid blue.

As this month goes forward, my goal is to attend as many of the Autism Awareness events I can. Make sure the ND presence is known off the internet. And of course, execute a well planned birthday party for my two Autistic kiddos and their non-Autistic classmates. Integration works!

Nominee to Disability Council Is Lightning Rod for Dispute on Views of Autism

The above is an article from The New York Times about the president of the Autistic Self Advocacy Network, otherwise known as ASAN, Ari Ne’eman. His nomination has been placed on ‘Hold’ anonymously. As a candidate, President Obama had very high remarks for Mr. Ne’eman.

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.

His nomination marked a first and if nominated, he will be the first person with an Autism Spectrum Disorder on the NCD. As stated, that nomination has been placed on hold. In the NYTimes article, Autism Speaks co-founder Jonathan Shestack was quoted to say the following:

“Why people have gotten upset is, he doesn’t seem to represent, understand or have great sympathy for all the people who are truly, deeply affected in a way that he isn’t.”

The summation does not seem accurate. As articulated in UMBC Magazine: Winter 2009, Ari Ne’eman is very aware the difficulties faced by those not only with Autism Spectrum Disorders, but of most people with a variety of mental and cognitive disabilities as well. Mr. Ne’eman spent much of his educational career in a separate public school for those with emotional and mental diagnoses. His Asperger’s Diagnosis does not preclude him from having been placed in the same segregated, self-contained schools that the ‘Low Functioning’ Autistic students did. Who better to help write legislation and promote liberties than someone who has experienced those issues?

As well, Mr. Ne’eman and ASAN have been very active on getting The Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) passed. While critics say the bill doesn’t go far enough, it is a very important initial legislation to stop the abuse of all students, not just those with disabilities.

In 10 short years, Ari has gone from being diagnosed with Asperger’s Syndrome to being just one mere step away from serving on the National Council on Disabilities. Through those years, he’s had to fight his segregation from the mainstream. He became a young voice in New Jersey to help those just like him. Then to founding a now national organization with several chapters across the US, not to mention affiliates across the globe. Just to be silenced again. To be segregated again. To be told that all the fighting, all the changes he’s helped to come through is not enough. That he needs to stop fighting for those who have no voice because it’s more important to find the cause to eradicate Autism.

Stand up for what’s right. Do not let Ari Ne’eman’s voice be silenced. Call your Senators, email them, write letters. If his voice is silenced now, who will be next? When are Autistic people going to be given the right to speak for themselves?

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.

Do those of you with Autism and parenting find yourself not meeting the 2/3 rule? I’ve been attending a support group for parents with Asperger’s kids and for adults with Asperger’s. It has been stated more than once that maturity level of people with Asperger’s is 2/3 their chronological age. I’m 27 now, so I according to this rule should have the maturity of someone that’s 18.

Now, without a doubt, I have met people that meet this rule. I just find myself not. Then again, I don’t think it has anything to do with neurology. I know some people I went to college with that are still maturity wise at a 20 yr level. I attribute a lot of it to the fact that I have kids. My own instinct was to mature with the birth of each of my children. This does not hold true for everyone. Again, I know someone who has a child that doesn’t have maturity.

Also, does being articulate change your perceived maturity level? I was complimented that I am one of the most understandable of the ‘Aspies’ that attend this support group. I’m sure it doesn’t hurt that I am raising Autistic children. So I can understand where the parents are coming from as well as the adults in the group. Have any of you witnessed this phenomenon? Especially those of you raising Autistic kids as well?

I think the 2/3 Rule is very subjective though. It really depends on the circumstances with your life.

I have connected the website to Facebook via Facebook Connect. For those that choose to, you can connect your current screenname to your Facebook account. This is not mandatory, but instead gives you a little more functionality. Hope you enjoy. I’m also setting up a Facebook fan page so you can become a fan. This is purely for publicity sake, so you do not need to add if you don’t want.

When I get the chance, I will see if I can connect to Google Buzz for those that are interested in that as well. I do have a current Buzz page set up for my private use that our twitter site is linked with. But it might be nice to have all social domains covered (except for MySpace because I loathe MySpace).

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.

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.

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.