the white house, part three. settle in, this could take a while

*

Ed note – I had the tremendous honor of attending an Autism Conference at the White House this past Monday. To catch up on the story of how on earth I, of all people wound up in Washington, please follow the links below by clicking on the words in blue.

First, I wrote THIS, which led to an invitation to this which in turn led to me writing THIS, THIS, THIS and THIS. Please go ahead and click the links before continuing so that what follows will make at least a little bit of sense. Take your time; I’m not going anywhere.

OK, so now that you’re all caught up, we pick up the story where we left it off …

**

Introductions out of the way, it was finally time to get down to business. Assistant Attorney General Perez led us off with what was to be the first of three questions aimed at facilitating conversation. This was not a crowd that needed much encouragement however. It was quickly obvious that we would never even hear the second question no less the third, as the clock would run down while we were simply trying to ensure that everyone who wanted to speak had the chance.

Funny thing is, I don’t even remember exactly what the question was. I believe he asked us to speak to the particular challenges that we face in terms of Community-based services. Truthfully, he may as well have just said, “Ready? GO.”

I didn’t take notes throughout the open response time, so I fear that my recollection of this next part is sketchy at best. I was determined not to record, but to absorb what was happening in the room, which is all fine, but when your brain is pretty much at capacity, there’s not much room for retention after the fact. Also, there’s a lot of detail that I’ve chosen to leave out lest this series turn into an epic novel, so I hope broad strokes will be sufficient.

The first few speakers addressed the needs of adults with autism and spoke a great deal about the desperate state of services to that population. They spoke about the private initiatives that they had been compelled to undertake in order to provide support to parents seeking to find or create group homes. They talked of their own herculean efforts to create blueprints for families in the absence of any real guidance from the agencies designed to serve them. They reminded the government officials that children grow into adults – a fact not always obvious for a community that, by necessity is so focused on the very next moment in the very next hour of any given day.

The refrain was the same as that which I’ve heard a lot recently in my work with Cole. Agencies are not communicating with each other no less working together, funding is self-defeatingly restrictive and riddled with rules that are not just counterintuitive but often serve to cancel out alternate resource streams, and services – when available at all – are delivered by people who are not remotely qualified care givers. As Cathy Boyle put it, “When we’re paying these folks $12-15 an hour to work with some really challenging situations, it’s tough to compete with McDonald’s.”

There was an apparent consensus in the room that the qualification system for adult service professionals needed an overhaul, as did the laws surrounding permissible interventions. There was resounding agreement that experience mattered more than degrees and that often, laws detailing how a care giver can (or cannot) intervene when a person is exhibiting self-injurious behaviors actually served to exacerbate those behaviors and ultimately did far more harm than good.

There was some talk about employment. Though another breakout session covered it, it’s hard to talk about adults in the community without discussing their need for (and our country’s need for them to have and maintain) appropriate and fulfilling employment. Job training and on-going coaching is a small price to pay for putting an entire population to work. Especially when we consider that a working population contributes to – rather than drains – society at large, not to mention the money saved when considering the cost of depression and addiction that can otherwise arise when the supports fall out from under our community’s adults as soon as they hit twenty-two.

In talking about adult services, it quickly became obvious that fixing the system would necessitate not just community buy-in, but an interagency government overhaul. As AAG Perez said, at the bare minimum we needed cooperation from the departments of Justice, Housing, Transportation, Health and Labor.

As we moved around the table, a couple of younger parents began to speak about the challenges that they faced getting help for their children. A gentleman from Virginia took the words right out of my mouth when he said that the most effective way to approach the needs of the next generation of adults was to serve them before they BECAME adults. I nearly shouted an Amen.

Idil, the Somali woman who I’d met earlier, spoke with palpable emotion about her community. She reminded us that one in twenty-eight American born Somali children in Minneapolis is on the autism spectrum. No matter how many times I hear that number, it doesn’t get any easier to wrap my brain around. She spoke with passion about her pre-verbal son and her desperate hunger to help him. I was moved to my core when she spoke for so many parents I know, saying that she would do anything if she could just give her son her words. Faces flashed in front of me. So many silent children. My heart ached.

She spoke from the place of desperation that so many – far, far too many – inhabit. Her words were pleading. “He needs a cure,” she said, fighting tears. She steeled herself as she continued, “If he were to break a finger,” she said, “the doctor would fix it. Where is the doctor to fix this?”

Suddenly there was a sharp, pained outcry from the end of the table. It was Katie. She was shouting.

“WE DON’T NEED TO BE FIXED!”

She immediately apologized. “That was inappropriate; sorry.” She wasn’t apologizing for her words, only their delivery.

Idil looked at her. “No, no you do not,” she said. “YOU are perfect.” And I trusted that she meant it, from the bottom of her heart. But for Idil, the mother of a child without words, there was almost no connection between her son and these highly verbal, extremely high-functioning (whatever the heck that actually means) adults. Her son needs help. He needs it now. As far as she is concerned, what he need is a cure. The autistic adults in the room, however, are perfect.

And right there, I thought – right there at the crossroads of needs so disparate as to be contradictory, of a spectrum of human experience so broad as to include, to paraphrase my friend John Robison, highly verbal, commercially successful geeks on one end and severely disabled, non-verbal people on the other. It’s all right there.

I raised my hand.

It was time to speak up.

To be continued.


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22 thoughts on “the white house, part three. settle in, this could take a while

  1. Sweet mother of pearl, I feel like this is a mini series! DOAM, had I been in that room I would have been a hot mess when Idil AND Kate spoke from their hearts. Not sure how you kept it together, or if you did, but I can’t wait to hear all the details. One love!
    Go C’s!!!!!!!!!

  2. your post today was so perfect. That’s the conversation our whole community needs to have. I know my friend whose child is pre-verbal would do anything to “fix” it for him. But she would never say “cure” for fear of upsetting people who view their autism as a part of their child. I wish there was a common ground for our community. Glad it was all discussed there, and can’t wait for the next part!

  3. The comment about the pay is right on the money. I was offered a position with a large national company to be a ABA therapist but they only wanted to pay me $7.25 for training hours. Hours are considerable training whenever a second person is present with you. guarantee it’s all training the first 4 months of employment not full time hours plus any future training meetings no real definition was given for what they considered training. and then I would be paid $15 and that is almost having a masters degree, the degree its self would only bump me to maybe $17. While this company is charging parents $150 an hour. I could make more at a bar. while I would love to do ABA I cannot provide for my family on that pay in the DC metro area

  4. Thank you so much for continuing to share this experience. It is of considerable importance to those of us embedded in the world of autism to feel like we have a voice. A voice that being heard and making a difference.
    I fully understand how Idil feels about her son. My son is 4 and is pre-verbal (before DOAM, he was non-verbal). I feel like I can handle all the other diagnoses (sensory processing, auditory processing, etc) if he would just TALK! My concerns about his language development are all consuming – the first thing I think about each morning and the last each evening. I am astounded and so impressed by those with autism who can advocate for themselves. In my eyes, they need no cure. In my eyes, the gift of language is the only cure my son needs.

  5. Ah, the heart of the conflict within our growing community comes to the fore. *sigh* I just don’t understand why it has to be one or the other, KWIM? Sure, there is SO much I would change for Nik if I could. I don’t think that feeling is un…ique to parents of children with autism; I think it’s unique to parents. Period. And I don’t think it means we ever want to eradicate so much of what makes our children the special and unique beings we love so desperately. Just, that we want to make the road easier.

  6. I thought of John’s words yesterday. I met him and heard him speak to autism and how it can absolutely be deadly, as he explained what had been missing, what he himself had not known when writing his first book, Look Me in the Eye. At first it felt so wrong for him to be saying what he was. I very nearly turned off my listening ears, but I held on and considered his rationale, and I quickly realized that he was right. It is not deadly to those who speak, to those whose functionality allows them independence, but in many ways autism is a death sentence to those who cannot communicate, who cannot care for themselves without tremendous assistance, to those whose desperation leads them to suicide. In those respects, John is absolutely right.

    Yesterday, John’s words came flooding to me as I tried to explain the leveling anxiety that my 3 year old has and why he is not just going to “snap out of it.” I became filled with dreadful worry that my son, though verbal and progressing in his communicative speech, could possibly fall into that jaded, disconnected, hurting and desperate group of youth that resorts to deadly self-injurous behavior because they don’t fit in, because they can’t scare the demons away, because they see no other options. I very nearly cried as it occurred to me that the fear and anxiety that my son carries at 3, if not properly cared for and attended to now, could lead to a realization of my darkest fears.

    It is a burden I now carry, one that I hadn’t considered before. A burden that requires services that my son does not have, and that I cannot afford. Yes, a communicative alliance of departments centered on serving adults and children on the spectrum. Services that are preventative in nature, but comprehensive enough to be meet the diverse needs of our spectrum at any age.

    Thank you, Jess, again for being there.

    • Oh, I was so there, where you are right now, Aimee. Everyone, including the pediatrician, told us that something in our daughter would just “click” one day, and she would function just like everyone else.

      My girl is neither high functioning nor non-verbal, and she is almost 10 years old. The older she gets, the more mature she looks, the more beautiful her face and body become, the more terrified I become.

      She is anxious to the point of compulsively touching things and people all the time. We’ve been given a prescription for an anti-depressant, but the insurance company is taking so long to deliver… it’s maddening.

      Hang in there. I’m with you.

  7. Thank you so much for taking us with you. I’m so pleased to hear that the entire community is being represented and respected in such an important way, this was great. Waiting the next post with anticipation.

  8. Pingback: Hocus Pocus « Welcome to StimCity…

  9. I also do not feel connected to people who are high functioning. I feel like my son has a totally different disorder from those people. It has the same name, but it’s different. I doubt I would want to cure him if he was able to speak, and work, and live a life that made him happy. I would, however, love to cure him now. He’s non-verbal and tantrums a lot which says to me he is not happy and wants a different kind of life. It is a tough and thin line we tread trying to be true to our own experience while staying sensitive to others who are in this very large boat with us.

  10. I want the long version with every detail!!

    So want to hijack your comments with the high function/low function discussion…

  11. Oh, you do know how to set up a cliffhanger!

    Thank you, thank you for being there, for saying — whatever it was you said, I can’t wait to hear! — and for reporting it all back to us so faithfully.

  12. Jess,
    Thank you for sharing all of this. I have to say as the parent of a very “high functioning teenager,” she too has been failed in so many ways her entire life. We did not receive any services. A psychologist to talk to and things I tried after extensive reading is all she has ever had. Luckily I did some things right, but not everything.

    I did not protect her from the teacher who made fun of her vocal tic for an entire school year. I did not protect her because both my husband and I had told the teacher to just ignore it and we did not know she did not. This was before we had a diagnosis. Would it have made a difference if the teacher had understood? I have no idea as this year we had the teacher who did not listen despite knowing she has Asperger’s and had been a victim of bullying.

    I do understand why parents of children on the “lower end” of the spectrum want to “cure or fix” their child. I just want to fix the rest of the world so my daughter can be happy and accepted instead of bullied and misunderstood. I think all of us have to stop fighting and realize services should be available for everyone.

  13. There is an idea floating around in the medical/educational world that there is no such thing as “autism,” only “autismS.” There are too many types to say this is one neurological disorder. There are kids who overcome their autistic-like responses to stimuli and there are those who never develop the capacity for verbal speech. There are others, like my daughter, who can talk and talk and talk — and no one, not even me sometimes, understands what she is trying to convey.

    We still don’t even know what autism definitively is. I know we’re the ones we’re fighting for, but I can’t help but wonder what the world will look like to parents like me and kids like mine 100 years from now. And to envy them.

  14. Wow – Jess, I am so amazed how you remember all of this accurate details. I don’t remember even what I said.

    I think all children/adults with autism are perfect including those that are verbal (like the ones in our group) as well as nonverbal kids. However, we must be united and find why some are not able to function as well as those in the meeting with us that highly educated and not block it.

    When a woman is pregnant and someone asks her what are you having – we all reply “I don’t care as long as it is healthy”. This means a child that grows healthy, communicates, eats, sleeps, tolerates sensory, etc. I would give my son my words and my ability to sleep faster than a New York minute for a really long time.

    I am not sure why some people interpret finding a cause and a cure for autism means them being obsolete when in fact it is the opposite. God forbid if someone had cancer and it was treated and they were now functioning well, I would think they would not say we don’t need to find a cure for those still suffering with it.

    In autism, there is so much confusion and division that as Mike said researchers are often turned away by that. Whether autism is a disorder or a condition, it is altering dreams and hopes for so many children and families including mine and I would give the oxygen I breathe to solve that puzzle while respecting and supporting those that are doing ok with it. I think anything less is inhumane for so many that can’t even do basic human functions let alone go the White House and tolerate all of that sensory. United for all types of autism we stand – divided we all fail.

    The answer is better services, resources and yes more targeted research so that we can find a cause, a cure and a way to prevent this crap for altering any more dreams. I asked a Somali mom that has three kids with autism, what are your dreams for your kids and she replied “the ability to tolerate Target store when they move their items around and not notice”. Can anyone honestly say we don’t need some kind of research to give that mom a dream of “I want my child to be the next Barack Obama”.

    God – I hope not!

    Anyway, I am so glad that I met you. You are an awesome mom with an amazing memory and a kind soul.
    Thanks,
    Idil – Somali Autism Mom in Minnesota

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