100 Days and Many After
Autism Speaks has created a 100 day kit to help families navigate their way through the 100 days after getting an autism diagnosis. After filling out a brief survey, an Autism Team Coordinator will contact a family and “personalize the kit”:
The turn-around time for a new kit will be approximately one week from the date of the initial request. Members of the Autism Response Team will follow up with families four months after they receive the 100 Day Kit to see how they are doing, answer any questions they may have, and solicit their feedback.
There is an PDF file of the kit is available here.
The “kit” provides basic information about what autism is and getting it diagnosed; describes various treatments (mostly educational, such as ABA, Pivotal Response Training, Floortime, and RDI, as well as speech therapy, OT, PECS, and the gluten-free casein-free diet); an “action plan” for the 100 days post-diagnosis; hiring therapists; some basics about safety, including a form to fill out with emergency information about one’s child; sample forms for keeping notes on service providers and treatments and contact information; a glossary. Also included are sections on “tips for grandparents”; the “ten things an autistic child wishes you know”; IDEA, IFSPs, and IEPs; and a list of websites (including the Autism Society of America, and the National Autism Association and the Autism Research Institute, the latter two of which advocate for the theory that vaccines cause autism and emphasize biomedical treatments) and books (including one with a biomedical focus, Changing the Course of Autism: A Scientific Approach for Parents and Physicians by Brian Jepson, M.D. and Jane Johnson).
I’ve been trying to think back to when Charlie was diagnosed, on July 22, 1999, and to think about what I might have done with these materials, much of which can be found in other books and websites. The notion of being able to call someone seems helpful—always good to hear a human voice at such times—though I found local organizations and groups the most helpful and, somehow, the easiest to approach (that’s just me). One of our biggest worries when Charlie was just diagnosed was where to find therapists and a local organization—even a local email discussion group—might be more helpful here. This seems a petty point, but the PDF file is quite large and, due to its being in several colors, will take some time to print out (and would empty the color cartridges of my printer fast): Perhaps simpler forms in black and white might be made?
It was actually the 100 days prior to Charlie receiving his official diagnosis (from the Minneapolis Children’s Hospital’s Child Development Center) that Jim and I started to look for treatment and therapies, to start Charlie’s IFSP. The news that one’s child has autism does not come, of course, with a crystal ball to show the future: Certainly then I would have been glad to know of the 100’s of good days we’ve had with Charlie, and of how there are resources and ways to get through some extremely difficult moments. And how, those first 100 days post-diagnosis are just the beginning of a long journey, rocky and twisting and muddy at times; of a lot of adventures.
Tags: asd, asperger, autism, autism speaks, Diagnosis, Family, Parenting, pdd-nosRelated Stories
POSTED IN: Autism Organizations, Diagnosis, Parenting, Treatment
9 opinions for 100 Days and Many After
Leanne
Mar 3, 2008 at 10:31 am
I think a system to put you in touch with other parents in your area would be a much better service. I took my first breath of relief the day a mom in my city offered to come visit and talk with me (I met her through an internet group) about her son and her journey. It really helped me to realize that there was a future and it could be bright.
Jen
Mar 3, 2008 at 12:38 pm
The Elder was in therapy months before his official diagnosis. Even though we knew it was probably what we were facing, the 100 days after were filled with a lot of loneliness and depression. I agree with Leanne that support groups are harder to find than information about services.
Marla
Mar 3, 2008 at 1:28 pm
We never had a certain day for diagnosis. We have always been struggling with mulitiple issues. I wish our diagnosis process was more straight forward. I still have people who say things like, “Are you sure M is autistic?” I want to scream. I try and explain and then wonder why I bother.
livsparents
Mar 3, 2008 at 1:51 pm
I have to applaud AS for putting something like this together. There were so many unanswered questions we had in the 3-6 months between suspecting and confirming the autism diagnosis. Having a 100 page document to peruse that targeted ‘newbies’ would have been a Godsend. We can argue their politics, research and use of autistics in their plannng/governance, but they alway seem to remain true to their ‘target market’, parents of the newly diagnosed…
Now if we could just get these in the hands of pediatricians and government agencies, we’d be getting somewhere!
Kristina Chew, PhD
Mar 3, 2008 at 1:56 pm
They do seem to be focusing on the parents of the “newly diagnosed” in a lot of what they (AS) has come out with——it’s not actually 100 pages long, around 50 with the forms etc.
Leila
Mar 3, 2008 at 2:04 pm
I agree that this 100-day kit is a wonderful service for families countrywide. Our local FEAT chapter is excellent and provided me with such a kit even before I had the official diagnosis. But I’m sure that this is not the case in most cities and rural areas. Also, many parents have trouble finding local organizations, and Autism Speaks being so well known can help those families hook up with the local services and support groups.
Leila
Mar 3, 2008 at 2:05 pm
I meant “my son’s diagnosis”. : )
Emily
Mar 3, 2008 at 2:54 pm
“The notion of being able to call someone seems helpful—always good to hear a human voice at such times—”
I just read this and thought, “Not me!” I almost never want to hear a human voice, especially when I’m stressed, and by far prefer email and the http://WWW. That probably makes me weird. But I already knew that. I’ve even had to force the issue with our special ed coordinator at TH’s school–she LOVES the phone and doesn’t really like email, and it took me awhile to get her to understand that both my husband and I far prefer emails to phone conversations. I simply remember what I read far better than what I hear. Hearing disorients me if I’m having to think while I do it.
As for the “kit,” that probably works OK for some people. But we didn’t have a “D-day” where suddenly the news was broken to us about TH, and once the official Dx came in, the professionals we were consulting immediately armed us with the info we needed to move along. I also, of course, spent tons of time on the Web. I didn’t find in-print books that useful–by the time you get them, they’re outdated–and I’m not much of a “kit” girl. But they probably at least can keep the kit reasonably up-to-date, and not everyone’s going to kick all of this off with the great professionals we had.
Cliff
Mar 3, 2008 at 5:00 pm
I have to agree with Emily here, that I’d very significant rather not have a continuous contact with a human voice (actually, it’s kind of a horror movie for me, which is why I don’t really give out my number, and often just won’t pick up the phone). The impersonality and personal timing of e-mail makes it far preferable to me. Then again, I’m not the target audience (at least for a while).
But the kit does sound generally like a decent idea, though I must profess to preferring that it be printed elsewhere, so that some of the “anti-mercury” advocacy would be limited. It’s not a bad introduction for those who really would otherwise have none.
Cliff
Have an opinion? Leave a comment: