Monthly Archives: June 2016

10 Lessons for Transitioning from School to Adult life for persons with autism

After 3 months post-transition, we’re over the hump of that word everyone fears – transition – and moving on. Here’s my take on essential lessons for individuals with autism – particularly the profound kind – that turn 22 when in the state of MA we shift from school to an adult life.

Media accounts make it seem dire – “the cliff,” it’s called. I roll my eyes now when I read that term, especially now when I’m done with it. No life isn’t perfect. There’s a stunning lack of understanding of autism even in supposedly fine programs, and plenty of gaps with community-based programming and employment. Maybe my analysis would be colored differently if we were in crisis or sitting around watching TV all day until an opening in a program arose.

But there is plenty of growth, goodness and dare we say happiness available on this side of the rainbow.

1. Know them deeply. We all know parents make the best advocates that it’s emphatically the case as you move into advocating – OK, the better word is arguing – for what they need to succeed. Believe in them. They will succeed and so you will you.

2. Decide if you’re seeking residential support, for now. The fundamental decision point at least from my view is whether you want to move toward housing supports outside your home for your loved one. I know advocates who assert that housing is a far more important determinant of happiness than day programming. Many of them are individuals I admire deeply. Yet for me – I just can’t go there yet. It’s a huge leap for me to trust that the many gaps in my sons’ skill sets will be adequately addressed by staff and a system that doesn’t value what I do. Flossing their teeth daily, for example. Choosing to focus on on a day program simplified the task for me. Theoretically if your individual is deemed appropriate for state support, the funding decision on housing and day programs are separate. Bunk, I say. I decidedly felt that by not advocating for residential supports right now, I got what I wanted (mostly) in the boys’ day programming.

3. Get them paying work prior to the transition. Not every individual with autism can work competitively, particularly the profoundly affected. And we are so far away as a world from supporting employment for the disabled. Disgustingly, sadly far away. However having competitive employment under MA’s new “employment first” initiative that values the ability to work even to the point of spending more money to support an individual – is a game-changer. My Jeff works competitively and it was the ticket to IMHO a vastly better day grid. I only wish my Will presented with as readily served skills. Not that I have stopped trying, but securing job coaching and support after the transition is markedly harder, at least in my nascent view of it. It’s like someone has decided he cannot work competitively which is stupid, flawed and one of these absurd binary choices made by a system that overcategorizes, but that’s another riff for later.

4. Make DDS your friend, but know their strengths and weaknesses. Wake-up call to MA residents – we have it vastly better than in most states. The transition process is funded, staffed and by and large, it works if you work it. DDS strengths, from my experience: they genuinely care. They actually do know lots about programming and options. When you make reasonable requests that are in line with your individual’s documented needs and goals, they generally work to support you.

DDS weaknesses – they wait til the last minute. No matter how organized you are, how much you prod and how well you as a parent work the system. It’s maddening, but just set your expectations accordingly because you can’t change it, so railing against it just wastes time although it’s fun to do because all your autism friends relate, too. Funds are not unlimited and when you ask for more than the Medicaid funded ration, there’s a process that throws up roadblocks and that even DDS itself doesn’t understand. Lastly, I’ve observed an undercurrent of “we can’t save everyone” in particularly affected and intractable individuals. Perhaps it’s a remnant of old institutional days and yes, OK, maybe it’s tru. But if you ever see that appear with your individual – please firehose them until they’re publicly shamed. Every human has potential, dammit.

5. Clear your life around the time of the transition. My workload lightened by accident 3 months prior, which I viewed as a cosmic sign and for once, listened. For this over-commitment addict it was one of the best moves I made in recent times. Meetings, paperwork, phone calls to track and prod the process etc – they’ll require time, but more than anything you’ll need to a workable Plan B in place in case there’s a – gasp! – gap. The G word was my most feared going into this. Will and Jeff don’t do well in a lack of structure – they revert to their bad behaviors. So I deferred new work, skipped a trip abroad with my mother timed 4 months after the transition than I know she really wanted me to take with her, and let paperwork and other household things be a distant 2nd priority. It made all the difference to me. Fortunately I had a gap of just 3 days before my guys started their adult program. But I had the emotional reserve available if needed to sustain us until they got to where they needed to go.

6. Celebrate the moment. I threw a Turning 22 party which probably added more busy-ness, but was one of the best things I did. Truly like me, of course I had to schedule every house fixup we needed in the past 20 years ahead of the big soiree. The new ceiling fell down 2 weeks before the main event and the passive-aggressive plasterer kept us on tinterhooks with endless no-shows, and the new 40-lb art piece of a mirror also fell off the wall the night before. But the party was one of those life highlights that carries you through the dark times. I gathered every therapist, teacher, social worker, neighbor, relative and friend I could reach as a thank you and send off into our new life. Amazingly about 60 of them were here as my village celebrated this milestone. The warmth and love sustains me even now. My village joined hands around my family, gave us a hug, and reassured me that there is another village of fabulous friends I haven’t yet met that is awaiting me here on the other shore, if I but open my eyes and see it.

7. Recognize the biggest gap post-transition – free time. No more Monday after-school art class. No more proms, winter dances and movie nights with your class. For many individuals who formerly had some even limited degree of state-funded respite or after-school support, that goes as away too. Suddenly there’s this vast white canvas of time from 3-10 pm each day, and far fewer school-related recreational choices to fill it. Look around and even the most progressive autism related support centers skew their programming toward school-age kids. It’s hard to find programs even open to adults. If your individual’s behavior and attitude disintegrates with too much free time – you’ve got a problem.

Personally I wish I have the answer to this, but I’m still working on it. Blessedly I do have some degree of DDS funding to support some after school engagement but it’s even harder finding staff for adults. Working full-time doesn’t help and I keep getting in the way of my own good intentions to work less, which is a nice to have in some ways but, not really in others. My intention is to start a local walking club for those with autism that does shorter, less aggressive walks nearby as a vehicle to filling this gap. Not decluttered enough in my work life yet.

8. Accept that adult services are viewed differently than your own idea of life-building, and change what you can. Theoretically adult services are supposed to be focused on habilitation. In practice, too often they slip into babysitting mode just keeping individuals safe and somewhat engaged – while defining that term far more liberally than I do. Ostensibly, at a higher level, adult service providers believe they are supposed to be putting programming in place to grow individuals in their care. But old attitudes die hard, particularly with underpaid staff who view involved parents (that’s a euphemism for bitch I suppose) as the enemy.

I will never, ever stop helping Will and Jeff to grow – just as I haven’t stopped in my own life either. Human potential is God given, needs to be fostered and given back to the world. But the system isn’t ready or eager to proceed with the number and pace of goals that I want from it. For today my approach is more of a “changing what I can.” It may be settling, and I reserve the right to edit this post later as I learn more, because it sucks frankly on given days – and it is something I intend to fix, to the extent that I can.

9. Expect both bad and good surprises. Bad, in our house – the behaviors reemerged. Will’s disrobes went up pretty significantly in the 2 months post-transition. He expanded on trashing the drawers in his room and developed an interest in having certain surfaces totally clear and clean, to the tune of throwing away eyeglasses, measuring spoons, parts to air conditioners, and a host of sundry non-trash items left in his line of sight. Jeff’s self-injurious rubbing/blistering himself reared its ugly head and his masturbatory interest when stressed is back. His interests in certain aspects of women’s clothing is downright freaky in public and totally inappropriate especially when combined with a lack of understanding of social space. He no longer wants to have his every minute scheduled and some of the most loving shared passions of ours, like baking cookies with me, have become more sometimes things.

It pains me to write this as I would prefer not to have these behaviors as part of their world.
That said, we’re turning the corner on the disrobes, and working on Jeff’s issues too. Autism sucks sometimes.

The good – both boys have surprised me with their ability to tolerate some larger than planned expanses of unstructured time – AND with their ability to learn. They now are more reliable than not with bathrooming in public restrooms when there is no family bathroom where I can take them. You never saw a happier face than mine standing outside the BJ’s men’s room when the red door swings wide and familiar face emerges with all their clothes on! They surprised me with their ability to accurately ID 3 new WH questions about their day program that i recently instituted – not perfect but better than I thought. While I may not like it when Jeff says No to making cookies, he’s more fully his own person and this is a great thing.

10. Tomorrow is another day. Thank you Scarlett O’Hara for the profound wisdom that we can always start anew – turn the page to beautiful white space awaiting a new story to be scrawled upon it – and work to help our adult loved ones with autism to have a happy and productive life.

Adulthood with autism is not a holding pattern, a chasm or a flat-line EEG readout – unless you let it be. The process of crossing from there to here is time-consuming and may make you sad for the little boys that grew into men, and the ready system we knew. No doubt about it, it’s hard to find helpers and quality, appropriate services for adults like in school days. But they are there. They await you, and once you’re on the other side, on some days when the sun shines, the slower pace of working on schooling, and simply living life to the extent you can – is actually freeing. You, and they, can just get on with the business of living, through sun and rain. Dare I say it – you might even find you all are happy.