Overgeneralizing ASD and CT tragedy

[JAG10]

Diagnosing children has become so tricky in the past 10-15 years. All we thought we knew, well, we might not know after all. And some professionals are more willing to admit that than others. ASD has become the catch-all for anything neurologically atypical: ANYTHING. It really has become meaningless as a dx; except it gets you better coverage and services through insurance and schools. Ahhh, but now we shall add the stigma of the CT murderer into the mix. Oiye!

 

ASD had become a palatable diagnosis for parents. I get this as this happens a lot with speech/language impairments as well. Young child, apprehensive parent....clearly more going on but we'll just go with speech for now because it isn't so intimidating; ok, whatever gets the parents on board so I can help this student. Often students are being diagnosed ASD very young and then that's it. Well, either ASD is a fluid diagnosis or was an incorrect diagnosis to begin with or some combination of both. I have no doubt when my dd13 was in the midst of the worst of PANDAS I could have gotten her diagnosed an Aspie. But as an SLP, I knew that was not what was going on and obtaining that diagnosis wasn't going to do anything for her, so she never had an ASD dx.

 

Being a sociopath has nothing to do with ASD. Being more of a loner, difficulty expressing yourself under pressure, difficulty navigating the social landscape of life-yes, but not being a sociopath.

 

 

Here's an article related to a fear simmering.....

 

http://www.nationaljournal.com/politics/don-t-stigmatize-asperger-s-syndrome-in-wake-of-newtown-massacre-20121216

[rowingmom]

We overcame severe oral apraxia (which began with 15 month MMR vaccination) after 4 years of intensive PROMPT therapy. DD11 still had the age regressive/innapropriate social behaviour, ADHD and tendancies toward OCD, sound/light/touch sensitivities, motor planning/executive function difficulties that led to her "high functioning ASD" DX. She has made leaps and bounds since beginning treatment. Obviously not ASD....(unless you call ASD a group of symptoms caused by a genetic/congenital predisposition to infection(s) and an inability of the immune/detox systems to handle the result).

[LNN]

Here are two really powerful parent essays making their way around the web this weekend:

 

On Facebook, Donald Craig Peterson shares:

As a result of the Connecticut shootings, many of you have read this compelling piece "I am Adam Lanza's Mother" that has been shared and re-shared. Well, I am Ashley, Alex, Travis, Andrew, Michael and Brandon's father and want to dig a li

ttle deeper into our collective consciousness.

 

Yes, we need accessible mental health services for children, teens, and adults with serious mental illness, but we ALSO need much more compassion and less judgment. Some schools do a wonderful job creating a safe place for these kids...others do not. Imagine going through years of education and having no one understand how you truly feel. Imagine being backed into a corner everyday. Imagine feeling all alone. Imagine being bullied. Imagine being told repeatedly to "act" like other kids. No wonder drugs or hours of therapy are ever going to remove the layers of pain inside the individual.

 

To this day after 15 years of parenting six children with mental health challenges ranging from mild to severe, I have walked beside them, but I have never truly walked in their shoes....because that is not possible. Oftentimes, simple verbal or non-verbal language creates perceptions that defy logic. The signals in their brains simply do NOT connect properly. What I would like most from people in my community is a willingness to listen, learn and empathize. Thousands of caregivers every day deal successfully with difficult children who have the potential to create great harm (and even killing given the right circumstances), but they endure....many nights tired and exhausted from battling systems that like to blame the parent rather than examining the child.

 

So, if you know of families that struggle with an atypical child, PLEASE do not shun them. PLEASE do not fear them. Offer supportive words. Recognize their children's strengths. Speak to all involved like they are human...because they are. I am grateful for the teachers, therapists, law enforcement officials, extended family members who have taken a risk on my children and looked for the good in them. Well-chosen, positive words ARE incredibly powerful! At the same time, I hope that those who refused to see the whole child will continue to educate themselves or find another profession where their constant belittling does not add to a problem that is already immense in size. Sadly, church became one of the most judgmental places of all...we had to quit going because of the way some people made my children feel about themselves. They hated the place.

 

Almost none of the strategies that worked for my parents in raising their six children work with mine....sometimes a different and non-traditional approach is ALL that is needed....before the damage cannot be undone....before a crime is committed...before a heinous act leaves someone injured or worse.....dead.

 

Today, this week, this month, this year, and always.....who around you needs a caring voice. Don't be afraid to reach out to someone unlike yourself.

 

And this one, written by a mom who fears her child could be another Adam Lanza..

http://www.blogger.com/profile/18104642282433680432

 

I agree with you, Jill. Labels are too easily handed out, not just for ASD but for childhood bipolar and other labels. I have no objection to a child getting services that can help and in that sense, early ASD diagnosis is a good thing. Wider acceptance of an ASD label is in some ways a positive. But as I start working next month with parents who's preschoolers have ASD diagnoses, I'm amazed at how few have ever been told about the biomedical options for treatment (in addition to, not instead of, therapies).

 

I feel like a nut whenever I even bring the subject up. And yet, a few get wide-eyed and really want to know more. It angers me that in the wake of this horrific tragedy, the two conversations that will get air time will be a renewed and angry debate over guns and a less-covered conversation about mental health - but even that will focus on psychotropic meds and making sure people take them. No one will talk about infection or diet or methylation or helping people overcome biological problems that literally drive them crazy. It's just too "out there", too complicated for most people to embrace. And yet, it's such a big part of a potential solution.

 

I can only hope that by building strong relationships with those who work with my kids, with those I will start working with at an ASD social therapies center next month, by sharing thoughts in a blog, it creates a small ripple effect and a few lives are made a little better because there's a little less stigma. That my kids will be less stigmatized for their issues because I was able to open up the conversation and make people understand a little bit more. Make them less afraid that being sick makes you a sociopath. One more blog as food for thought...http://www.easytolovebut.com/?p=1983 I think we all need to speak up more, to make something good come from this horror.

[beeskneesmommy]

Thanks for posting this. I was really disgusted with the way some of the press handled the news during the first day or 2. They released bits and pices of sometimes somewhat irrevelant info (like the DX of Aspberger's) and pushed out lots of speculation. Rudy said it well when he was asked all sorts of questions from a reporter: 'What we do know is that we do not know a lot right now and anything we state is simply speculation, so let's wait until the investigators do their jobs and are able to give us real information...' not a direct quote but close. I do not have a kid with "ASD", just PANDAS. However, I was greatly disturbed by the inference that the general public might misinterpret...that somehow having ASD/Aspberger's could cause this level of instability and violence. -Kath

[kos_mom]

Kath--My sentiments exactly!

[WorriedDADNMOM]

LLM, I cannot agree with you more!!!! I had the same feelings with our middle dd who I believe would have been diagnosed an ASPIE....I was just ignorant to anything ASD. As we have gone down the PANDAS/PANS road, my what an eye opener. We had all those same fears of hurting self, others, pets all the sensory problems, behavior, bipolarish, and the list goes on..and on.

 

Only us parents who "live it" are the ones who "get it". Also, the aspects of biomedical treatments(let alone antibiotics) aside from the SSRI just amazes me. You get this dear in the headlights look when people don't get it.

 

Thank you for posting this and Thank you to all the parents on this board. It was a good refresher that we have been and are doing the right things!!!!

[JAG10]

Rowingmom, PROMPT therapy for speech/articulation is excellent if you can find it. I've only completed the introductory course and I make so much more progress with my students and at a much quicker pace.

Laura- yikes, what a hornet's nest that resulted from that blog post. She probably had no idea something like that was a possible result. The Internet is a tool just like any other that can be used for good or evil. Thank God we have all come together for the health and recovery of our sick children. Thank you, Sheila for giving us a place to call home and "work the problem."

 

 

 

[lmkmip67]

I think I need to turn off the news and computer because this is causing me to really worry about my own son. He isn't like so many describe in the comments of the mother's article floating around out there. He isn't violent. He has tics, OCD, and does have tantrums. But I am still scared of what the future could bring. I am sure it is my own fears speaking. But I still worry....I am not sure how to stop that worry....We are exploring all we can, next is seeing a lyme specialist. But how does one stop the worry?

[SurfMom]

We would all be so much better off....society, parents, children, stakeholders, physicians, researchers...if we would simply take the work "mental" out of the term "mental health".

[WorriedDADNMOM]

SurfMom----------------How profound!!!!!