Who Do You Serve?

So, I stirred a few people up with my last post, and it is worth discussing, I think.

Here's my dilemma:

• If I want to be fabulously successful, make lots of money, and be aligned with Corporate America, I have to play nice. And playing nice sometimes means saying things I don't believe, doing things I don't like, and ignoring certain elephants that hang out in corners dying to be noticed.
• If I want to support my chosen community of neurodiverse individuals, I need to be brave and speak up. I need to say things that are unpopular, that ruffle feathers, and that make Corporate America nervous.

Those of you who know me personally, know that I'm actually a really nice person -- I'm supportive, friendly, funny, outgoing, really smart, and would pretty much give you the shirt off my own back if it would help you.

You would also know that I have very little tolerance for bullshit (including my clients'!) and that while I can play the political game of niceness very well, I often don't choose to do so.

But, you might say -- playing nice gets things done. It builds bridges, and and can have better results long term.

Hm. I don't think so.

• I'm 58 years old, and as a feminist, I am appalled that so little has changed with regards to how women are treated in this country, certainly in business, and particularly in tech. (Ask me about the time I got written up for swearing in a meeting and what I had to say to HR afterwards.) 
• Before and after living through the AIDs crisis in San Francisco in the 80s, I have been a long-time supporter of our LGBTQ communities, and am appalled that we are still 'not there' with equal (and impervious) rights. My son will face less harassment than previous generations, but that is only here in this little bubble of California. 
• My friends and colleagues of color are no better off than they were 40 years ago, and in some parts of the country, far worse off. It is appalling how little diversity there actually is in Silicon Valley. Walk downtown Mountain View at lunchtime with me some time, and see what I mean. This is not diversity, no matter what we say.

Friends, it's not that I'm just some loudmouth. It's that I'm tired. I'm tired of playing nice and seeing that nothing changes. I know that people are well-meaning, and I know that others are working this, too, but it's too slow, and we risk moving backwards without forward momentum.

So when we talk about getting Neurodiverse people into good paying jobs -- where they belong -- and I get a bit feisty, know that it's not because I want to be annoying. It's just that this is THE SAME MOVIE again, and that movie is still playing for women, for people of color, and for the LGBTQ communities. That particular movie script has not yielded great results to date for other disenfranchised populations, and I see no reason why it's going to work now.

If you see me at a meeting, or an event, or walking down the street, and if I'm making remarks that make you uncomfortable, know that I'm doing it because I feel I MUST speak out. And in fact, I think MORE of us need to speak out.

This is the ultimate 'See Something, Say Something' moment. Reach out, yes. Build bridges, yes.
But also -- speak up.

Silicon Valley, You Ain't Woke (WAKE THE HELL UP!)

I've been to two Diversity and Inclusion events in the last week, both hosted or at 'large tech firms' here in Silicon Valley, and I have to say I'm depressed. Really. Depressed.

At the event last week, there were well-meaning governmental officials, tech managers, visionaries, and many of them are doing good work. But sadly the companies they represent, the organizations they run, really have no idea how big this issue is, or what the collateral damage is. 

On stage were two people from a governmental agency, along with a contractor I believe, who rolled out a web app to be used by veterans. No one was using it. They asked each other questions. They asked the sponsors (the VA) why it wasn't being used. No one knew, except to say, "Hrm, I guess vets don't use the internet!" 

Not to be deterred, the heroes on stage decided to do the unthinkable -- actually have vets come in and use the system (astonishing! so forward-thinking, so radical!) -- and they discovered that the web app actually did not work. Like, at all. It was broken. 

This was seen as a huge win for inclusion. HUGE win. I wanted to vomit. 

[Side note: For those of you who are not in tech, or have been in tech for less than 20 years, please know that user acceptance and beta testing have been around for DECADES (nearly as long as there has been software) and are part and parcel of any good system roll out. This was not a win. This was crappy planning and misunderstanding an entire community. Humility, not bravado, would be the socially-acceptable response.]

Last night, I was at another event held at a 'Silicon Valley Giant' with a panel of employees who had hidden disabilities about how inclusive their work life was, and how accepted they were. One of my colleagues asked: "How do people with autism get in the door?" And the moderator said, "Oh well, we've trained all our recruiters to ask if the interviewee needs any accommodations." 

So, I'm sitting there, listening to how these folks (all white, all male with the exception of one transgender woman) are able to be 'their authentic selves' at their place of work, and what a gift that was.

I (finally) got the mic and asked:

"Great that you offer accommodations to people interviewing, but what are you doing to train the interviewERS and management on interviewing people who may not make good eye contact, who may have stimming behavior, or may act is some form or fashion in a way that is not understood? What about the people who never make it to a second interview because they are being 'their genuine selves'?"

Yeah, there was a bit of stammering. Agreement that more needed to be done, that management and peers need training... more to do, always more to do.

But gosh, aren't we doing a great job already? Applause. Free food. Aren't we fab.

[No one dared mention that the vision-impaired person noted that the company fell over themselves to get him any assistive tech he needed -- anything, no questions asked. The individual with a mood disorder however, had to have a note from his therapist, which had to be reviewed by two levels of management and fully vetted and discussed before it was finally approved for his accommodations. Um, no shame in mental illness, right? ]

 

THIS is the echo chamber I want to scream out in. THIS is the mindset that needs to change. Facebook, Google, LinkedIn, Microsoft, Apple, stop patting yourselves on the damn backs. Get to work. We have people. You need people. Stop throwing up MORE barriers to their employment by your narrow sense of inclusion and diversity. WE HAVE WORK TO DO.

Get WOKE.

Neurodiversity Employment -- Why It's Broken

I just had the pleasure of speaking at AASCEND's job club in San Francisco with Michael Bernick and Andy Aczel of the Specialist's Guild, also in San Francisco. We were being videotaped for a documentary on autism employment (I'll be sure to share here and elsewhere when it's complete) about the state of the union, so to speak.

As usual, it was a lively conversation, which is one of the reasons I always try to get up there when asked -- I learn so much, too!

Here's a breakdown of the challenges/topics that need to be addressed:

• Poor definitions -- what is autism? This is a big issue, where for better or worse we have moved from media portraying autism as savants (Rain Main) to geniuses with less-than-perfect social skills (Big Bang Theory, Atypical, The Good Doctor). Those of us working in the field tend to use clunky definitions such as 'high functioning', 'moderately-impaired' and other ill-fitting and demeaning terms. The truth is, some folks on the Spectrum are indeed geniuses in some areas, and really struggle in others. Some struggle across 'functional domains' (skills society deems as necessary to partake in mainstream life). Some autistic people will earn advanced degrees and go on to have fabulous careers with little problem 'passing' as neurotypical. Others may require sheltered employment with hand-over-hand instruction to succeed vocationally. Autism is a poor definition as a whole, and the 'sub-type' definitions we use are not accurate. This is an important aspect to this challenge,because just as someone without the ability to add and subtract would make a poor accountant, not every job will  be a good fit for every person on the Spectrum.
• Not all CompSci -- think bigger. This brings me to the second challenge. There is a huge misconception that everyone on the Spectrum, certainly all of the 'high functioning' folks, are a perfect fit for computer science, networking, and programming jobs. Again, this is just wrong. For every autistic person who comes in trying to get into programming, I have another client coming in for graphic design, teaching, writing, and so on. We need to be wary of any program that sells itself as 'the fix' for this challenge through training and recruiting only for CompSci jobs. These are people with a wide array of interests and talents, not trainable code monkeys. 
• Silicon Valley doesn't get it -- Not Invented Here syndrome.The only major company who has really made a significant investment into hiring autistic employees is SAP. There are initiatives underway at Microsoft, Cisco, Google, LinkedIn, Uber, SalesForce, and other companies, but they are not interested (from what we can see) in working with other companies or workforce specialists in the Silicon Valley area. They want their own homegrown program, presumably so that they can enjoy the laurels of their work as proof to just how evolved they are in tackling this challenge. As a former high tech worker, this is the functional equivalent of everyone developing their own operating systems. We need to think Unix here. We (and others like us) have the infrastructure, the materials, the knowledge base, the connections,the hard-earned wisdom that can help these and other companies develop programs that work for THEM. Just like Unix as a platform, we need companies to see US as platforms from which to build their own programs. 
• Department of Rehabilitation, Department of Education, and EDD are all VERY late to the game. There is a good reason why parents such as myself are doing this work -- there are no systems in place to deal with these challenges, and we're not going to wait around for our government agencies to get with it. We'll led, hope they follow, and if not, we'll figure it out on our own. But it sure would be nice if these agencies helped us and companies fund this work so that we can make a bigger impact for more people.
• Colleges don't get it -- Skills not Degrees. Another very broken aspect of the equation is that college students are graduating without marketable skills. The world is very different now than when I was a fresh graduate -- smart people don't get hired. People with demonstrated skills get hired. We need to make sure that every person who invests in college -- on or off the Spectrum -- knows what will be needed to get a job, and then get those skills as part of his or her education. Further, tech jobs in particular mean ongoing education just to keep up. No one rests on his or her educational laurels any more, and we need to accommodate for that.

There's a lot more to say, of course, and I'll try to cover more in future posts. My goal was to work until things changed for the better, and I'm sorry to say it doesn't look like I will retire any time soon. 

©2017 EvoLibri Consulting/Jan Johnston-Tyler

Being the Nag (And Learning to Love It)

Being the Nag. 

Don't we get enough of that at home? Nagging our children to do their homework, to do their chores, to behave in a way that reflects well on us as parents...after all, it's all about us, lol.

Yeah, we do get enough of that. And, we probably need to do less, because in the end, having a good, honest, and respectful relationship with your child is far more important than a clean room or straight As. Trust me on this.

But one area we cannot, and should not, stop nagging is with school districts, particularly around accommodations and services that are promised but not delivered, or followed.

As my colleague (and now employee) Rachel Roth will attest, it's just amazing how many goals on IEPs are developed, and then never followed -- no milestones entered, no reliable end of year summary, and if the goal didn't work (for whatever reason), they are often just dropped the next year.

If you've seen this on your child's IEP and think it's just you -- think again. It happens all the time.

Here are some guidelines you can follow to learn to love being a nag:

• Remember that ALL goals should be SMART:

1. Specific -- what skills or behaviors will increase or decrease?
2. Measurable -- by how much will these behaviors increase or decrease, and who will measure them using what metrics?
3. Actionable -- is this goal actionable, in that there are available resources and time, and are they defined? Who is responsible? (And, it should not be YOU or YOUR CHILD -- all goals on an IEP should have ONE teacher or administrator responsible.) 
4. Realistic -- is this a realistic goal? For example, if the school 'decides' that they can bring your child up from a 4th grade reading level to a 10th grade in one year, you may want to question this decision.
5. Timebound -- this is part and parcel of an IEP in so far as there should be notations on progress at regular intervals. 

• For this last item, ask that milestone DATES are added to the IEP, and then mark these on YOUR calendar, and contact the district for updates at that time. If you trust the district to give these to you informally, that's great. If not, call an interim IEP at each milestone to get progress.
• If there is not enough progress, or if there is none, then it makes no sense to keep that goal as is -- the goal needs to be rewritten to accommodate the failure. There's an old saying in product management -- Nine women cannot make a baby in one month. If timelines were well thought out to begin with, they should stick, which means more time needs to be added to that goal, which means it may need to carry over to the next year, and if not completed in a timely manner then you're past graduation with unmet goals, and that means that the school district can be claimed to owe you COMPENSATORY EDUCATION. Think services and goals, not timelines here. Their clock may be ticking. Your child's isn't. An IEP is a contract. When contracts are broken or not fulfilled, there are consequences. Compensatory education is that consequence.
• Think ahead. What skills will your child need in future grades? A mistake we see is to focus too much on academics, and too little on social and executive functioning areas, and later too little focus on independent living skills. We are raising adults, here, not forever students. IDEA clearly states that the end goal is to develop a young adult 'prepared for post-secondary life' -- which may include academics in college, but includes far more than that. Don't skip group work, WORK on group work. Don't hide your child from social situations, WORK on them. Don't let the school provide too much 'hand over hand' with regards to executive functioning, have them TEACH executive functioning. I don't want others fishing for my kids, I want them to learn HOW to fish!
• Get creative. "We can't do that" is code for "we don't want to do that". If your child actually needs something, and you can prove it and aren't totally off your rocker (sorry, there are a few...), then your child should get it. But think out of the box. And do expect that there WILL be things you should be providing for your kiddo, because more help and support all around will develop a better outcome for him/her. 
• Don't lose your sense of humor or your compassion. Districts DO work hard, and DON'T have adequate funding, so there's no need to be punishing or mean. Push, yes, but focus on the goals. 

Being a nag is much easier when you remember that this is a long journey, and that staying on the path will result in success. Too many kids end up with poor outcomes or delayed launches because the parents got tuckered out mid-way, or couldn't find the energy to keep up. Reach out to other parents and support groups if this is the case. You don't have to do this alone. But you DO have to DO it. Learn to love it!

©2017 EvoLibri Consulting/Jan Johnston-Tyler

ADHD, ASD, and Metacognition -- What to Look for in IEPs

It's that time of year again -- IEP and 504 season, when parents meet with school administrators and teachers to put accommodations and services in place for our kids.

However, I know that many well-meaning teachers and administrators really do not get what the problem is. They often see us as over-protecting our kids (or not working hard enough with them) and they see our kids as lazy, manipulative little snots. Yeah, really.

Even really great teachers who want to help believe that if the student just tried harder that s/he would be successful. They are missing the point. Entirely.

So, for you, your family, your child's teachers -- and mostly for your child -- I give to you the following description of what is really going on. Be on the look out for the 'buzzwords' you might see in progress notes or in emails from your child's teacher. They are code for 'your child is lazy' or 'you don't do enough as a parent'. Do not accept this language!

Okay, here we go:

ADHD and ASD compromise Metacognition – the congruency of awareness of time, place, and self: “I am here, in this place, feeling this way, needing to do this thing now, and that thing next.”

People with severe ADHD continually ‘lose the thread’ of what they are doing or should be doing, and struggle to get back on track as they lack the ‘traffic cop’ of metacognition to remind them. This is not laziness and is the root cause of most of ADHD’s impact.

-        Challenges this presents:

o   Meltdowns – unaware of key indicators of hunger, fatigue, stress, anxiety, and thus does not remediate until too late, and ‘blows’ or breaks down into tears (‘overly emotional’ or ‘aggressive’).

o   ‘Stuckness’ – unaware of ‘drift’ or being stuck (‘does not ask for help’).

o   Delays in activation – is distracted and does not start tasks (‘procrastination’).

o   Forgets sequence – completes first task, forgets that there is a second or third (‘lack of follow through’).

o   Missed social/informational cues – misses important information in classroom or forgets to write it down. Can miss irony, subtle digs, other social cues (‘poor social awareness’ or ‘fails to pay attention in class’).

o   Distractibility – inability to shift focus back to work after sensory/thought interruption such as people talking, door closing, phone ringing, thoughts of hunger, remembering a joke (‘cannot focus,’ ‘highly distractible,’ ‘goofing off’)

-        Remediation and Accommodations:

o   External prompting/cueing to remind person to ‘check in’ on here and now status: alarms/reminders on cell phone or computer, gentle reminders by teacher (“how are you doing and what are you doing – what do you need to do next?”).

o   Preferential seating to increase focus on teacher and ‘main action’ in classroom.

o   Visible timers to help remind student that ‘time is passing’ and to refocus on tasks.

o   Flow charts in field of vision demonstrating flow of tasks.

o   Written instructions detailing tasks.

o   Consistency in tasks so that there is a defined pattern or structure – “Always do this first, this second, and that last” or “Quizzes are always on Wednesdays, and notebooks are always due Fridays”.

o   Minimization of busywork so there is less overall to remember, execute, and turn in.

o   Verbal reminders to turn in homework so that students stop, get their homework out, and turn it in.

-        Lifeskills to Master (skills that should be taught by all schools -- buy my book!):

o   Use calendar (electronic or written)

o   Use reminders (alarms, post-its, flow charts)

o   Use list-making software

o   Learn/use taxonomy schemas to break down complex tasks (rubrics, worksheets)

o   Learn/use prioritization schemas

o   Learn/use decision-making schemas

-        

There you have it -- use this year after year. Remember to NOT let schools 'get by' with language that is damaging, with failure to provide adequate accommodations, or to make YOU responsible for your CHILD'S difficulties. IDEA and Title IV are clear about what schools must provide to make your child successful now -- and in the future!

©2017 EvoLibri Consulting/Jan Johnston-Tyler