Say Goodbye to School Days and Skittle Ways When Autism Ages Out
By Kim Stagliano
From time to time when I'm not too grumpy or tired or busy with mastering adult skills, I'll be writing about autism and aging out. My oldest finished school earlier this month. Forever. She turns 22 in December.
1) By high school, ditch the data clicker. I mean it. Reams of graphs and charts detailing how many times your child tore a piece of paper (Ugh! Destruction!) or slapped her hand on the desk (Ugh! Aggression!) will not help the next group of providers. At all.
2) Ask the paras to step back. Literally. Let your child learn how to walk on his or her own in the hallways without a para at his or her arm. Eyes on arms length should be ample. We changed classes 3 minutes before the bell when one of my kids was having issues with pinching other kids in the halls. Many adult programs have a 5 - 1 or 3 - 1 ratio. Your child will have to learn to be somewhat independent. Scary, yes?
3) Ease way off the prompts the way you ease off the gas on a curvy exit ramp. A prompt dependent adult will have a hard time keeping up in a program that is not prompt based. No programs are prompt based at this time. Well, very few.
4) Programs that claim to be for special needs "including autism" likely are not. At. All. Just like we have schools devoted entirely to autism, we are going to need adult programs for job training, mentoring, dayhab, EVERYthing tailored to autism.
A local program that I will call Durmstrang Special Needs Program was stymied by my daughter's minor behaviors. I mean what on earth would they do with a young woman who sits DOWN on the floor and will not get UP when told under stress?" Imaging the horror! How could they possibly manage having to come up with coping strategies and a behavior plan to assist her in this huge transition. How about doing your job as a special needs center that claims to include autism with the $49,000 the State of Connecticut was ready to spend with you?
I know for a fact they have already tossed one young man with autism for his behavior. "I see no indication that Mia can work within a group," said the director to my team. Ouch. It's true, Mia had a behavior this year. The Sit In.
Programs want the shiny, happy disabled! (You know I mean no disrespect to my friends who have kids with other serious diagnoses so don't snark on me.) The "Mayor" (this is how one young man was described to me at the Durmstrang Special Needs Program) who can speak and smiles at you and maybe stands a bit too close but is a social delight. Heck, I loved the guy when I met him. I only wish Mia had his social ability. Alas, autism is not the Mayor. Autism might not look at you at all, let alone smile. But autism hears you, sees your judgemental looks. Autism, like KMart, sucks to many programs.
Oh yeah, even among misfits we're misfits! Cue the elf song and let's build some toys.
Check out every program in your area where you think your child might be headed by the time your your child is in 10th grade. And then spend the next years working with your school team to prepare your child.
More later. Mia starts her program Friday or early next week. I'll keep you posted.
Pass the Skittletini.... make it a double. Wait, make that a triple. Gianna and Bella are next.
NOTE: I encourage you to read this book by my friend Susan Senator - from Skyhorse Publishing - for ideas on how other families are tackling adulthood for kids at all ranges of the spectrum and with stories from adults who themselves are on the spectrum. Autism Adulthood by Susan Senator
Kim Stagliano is a never-you-mind year old woman with three children on the autism spectrum. She is high functioning in many areas, although many routine tasks of daily living continue to elude her including: privacy within her own home, lack of constant worrying, cash flow competency and the ability to plan her future. She continues to qualify for services. Kim Stagliano is also Managing Editor for Age of Autism.
"Programs want the shiny, happy disabled"
About fifteen years ago I opined that my child wasn't wanted by their special needs school that wanted "Tim-nice-but-dim" who would sit compliantly and not be a nuisance in class (sadly not applicable to my child who is one of Lorna Wing's 'active but odd'). Most of the staff had no particular knowledge of autism spectrum disorders - 'de novo' in our community starting in the early 90s. There were exceptions who accepted and even liked my child. In our smallish community the impact of the autism epidemic has been painfully obvious and the next problem is that of adult provision. I was warned about this ten years ago by a well-known UK autism mother activist. Kim, I'm thinking of you and all the other Autism Mothers in the USA and UK.
Posted by: British Autism Mother | June 27, 2016 at 06:14 PM
Saddening, but not surprising, that your local autism program couldn't handle even your daughter's minor challenging behaviors. It's frustrating that so much government money is being given to groups whose staff lack such a fundamental knowledge of the clientele they're paid to serve.
I'll never forget the demoralizing IEP meeting in which my son's autism teacher crossed her arms and tartly told me, "I can't do anything more for him."
"Him" being a high-functioning child with a stubborn streak, likely aggravated by having three out-of-touch women in their late sixties as his main handlers. Frequently they evidenced inadequate innovative skills necessary to transition from managing retarded students to those with autism and EBD, as they clung to their $78,000 salaries.
Awkward, but not surprising, when I recently encountered that teacher at a fellow student's graduation party -- and the first sentence that flew unchecked from my mouth was about retirement.
Posted by: nhokkanen | June 27, 2016 at 04:10 PM
Ah, so true, Kim.
Wonder if Skyhorse would publish a compilation of all our stories of program visits, maybe call it "Really Great Special Needs Programs Your ASD Child Will Never Be Able to Participate In."
And what do you call that very point in the conversation with the program director in which both of you realize that there's not a snowball's chance in hell of your child/adult ever being allowed to participate there, but you still have to go through the next 20 minutes of the interview pretending it's actually an option for the future. Heck, you even manage to get put onto their email list so you can get weekly reminders of all the fun things your child *could* have participated in, if only...Not to mention the fundraising opportunities you're included in, regardless.
Pass the vodka, please.
Posted by: No Skittles for you! | June 27, 2016 at 01:41 PM
A small defense of the programs that are out there: state funding generally is based on the old model for ALL disabilities with the inclusion mantra. But the reality is that staffing needs do vary depending on the behavior and communication issues of the people being cared for. Long-time programs that were created before the "Age of Autism" are usually happy with this funding model. But when they say, "Oh sure, we handle everybody!", they all too often mean everybody who does not have behavior issues - which means our kids are turned away.
If you really want to change the status quo, talk to your state representatives. Unless they have a family member with autism, they have no idea that the funding model that worked for decades is failing this population. Let other autism parents know. I've heard too many say, "but I have state funding!" without realizing that the funding amount provided does not cover the cost of the services they are seeking. (Some variation by state, so your mileage may vary.)
Posted by: Vicki Hill | June 27, 2016 at 10:14 AM
Special education should not end at age 21. When we first lobbied for special education in Massachusetts, in the early 1970s, none of our children were anywhere near 21 yet. My son attended the Gaebler School at the Metropolitan State Hospital, and I was harshly criticized for having him in an institution rather than at home.
Then Special Ed passed, and thankfully he received funding for a residential school. At age 22 he came home, and immediately, was in trouble with the police almost every day. A social worker told me I might have to quit my job and stay home to guard the doors.
Thankfully, the police finally took him to Westborough State Hospital, and those were the best 10 years of his life. Then the state hospitals were closed. His past 13+ years in a "community" group home have completely stifled further growth. He keeps running away, and his physical health suffers during these periods, weeks at a time before he is found.
Yesterday's Boston Globe has an article that describes the problems we have been facing, trying to get any professional help for him. Thank the "Mental Patients' Liberation Front" for getting the state hospitals closed. Now we are having to deal with neurodiversity self advocates. Every effort must be made to prevent their interference with the lifespan care needed by severely handicapped adults diagnosed with autism in early childhood.
Link to the Boston Globe series:
https://apps.bostonglobe.com/spotlight/the-desperate-and-the-dead/
Posted by: Patience (Eileen Nicole) Simon | June 27, 2016 at 08:40 AM
Thank you for sharing the reality, always. We're right behind you. xo
~Michele
Posted by: Michele I. | June 27, 2016 at 08:06 AM
My child is in 10th grade now. I started asking around. I found that you can get money from the state for your child to participate in day programs, but there are no day programs available. Lovely.
Posted by: AnneS | June 27, 2016 at 07:58 AM
Kim, I'm right there with you and the constant anxiety that we parents face. My son aged out of school eight years ago and the worry over him never ends. He is in a day program now and he keeps asking us when is graduation. He doesn't understand that this is the adult world and there is no graduation once you are out of school. The adult world has wait lists for everything from day programs to respite to housing. The worry will continue for us all. Keep us posted on your beautiful daughter and her new adult life. Hang in there and keep writing!
Posted by: Gayle | June 27, 2016 at 07:51 AM