From the article: Screening and Diagnosis of Autism
Your doctor has just told you that your wonderful, beautiful child has an autism spectrum diagnosis. You walk out of the consulting room. What should your doctor or his/her staff give you, tell you or explain to you BEFORE you leave the office?
Resources
- My son was diagnosed with autism at 3.5 years old (he's now 7.5). I remember being told by the daycare provider who was trying to teach preschool that something was off about him (he spoke but repeated dialogue from movies and flapped a lot when he was excited; and he didn't play like the other kids). I told the pediatrician, who said it sounded like a developmental disorder and said that a lot of kids outgrow this. I left her office sobbing in tears, not knowing what was wrong with my son, with a screaming little boy out of control who was tearing up the exam room! No resources, no information. Just go home and love your child and don't expect too much from him! It wasn't until I did some research online that I saw the term autism. As I started to read more, I started to understand my child for the first time. By the time, he was formally diagnosed with autism a few months later by a pediatric behavioral specialist, I was well informed and anxious to get him the help he neede
- —Guest Paula
Autistic Adults and Hope
- I've put a lot of thought into this, since as a psychology student, I may someday be in the position of telling a parent that their kid is on the spectrum. As an autistic person, I am acutely aware of the importance of helping those parents. There are two things I think should be emphasized to parents of newly-diagnosed kids. First, and most importantly, autism does not take away your capacity for joy. And being happy matters more than having a job, being able to speak or any other skill. Disability isn't doom, it's just a different life. Secondly, they should seek out autistic adults. We've been in their kids' shoes, we can understand the little guys pretty well. And we can tell you what our parents did right and what we wish they'd done better. In terms of documents, 'Don't Mourn for Us' by Jim Sinclair would be one of my top choices. I think every parent of an autistic kid should read that.
- —Guest Ettina
Caveat Emptor
- I would like the doctor to say 'Health care fraud is a $100 billion racket in the US, and the bad guys know about autism."
- —Guest AutismNewsBeat
Caveat Emptor
- I would like to hear the doctor say "Health care fraud is a $100 billion racket, and the bad guys know about autism."
- —AutismNewsBeat
Good Information Only, Please
- My son was already in Early Intervention for developmental disabilities, I had done a lot of research so the diagnosis was no surprise to me. The Dev Pedi who dx'd him was really good about letting us know what additional resources there are out there, I don't think she slacked in anything, the one thing she could have skipped was the booklet she gave us from the AAP, I nodded the whole way through it until the very last pages which implied that our son would never have a real job beyond grocery bagger or flower deliveryman and that we would have to plan for an adult facility home after our death. How dare they say that about my 2 year old???
- —Guest Gretchen
Doctors Help
- I wish there was a checklist of services to consider. My daughter is kind of learning disabled and when my grandson was diagnosed with Autism. She was devastated. I had to read books, research the internet, and make many calls to direct her in helping him. No problem I had the time. But not all parents are as able or articulate enough to find out what to do next or where to go. Walking out with a diagnosis is just not enough.
- —Guest Rosa Rojas
Reality Check!
- Seven simple words would be especially helpful to parents: "It's not the end of the world!" Other useful phrases would include: "Use some common sense for once," "Helping your kid has nothing to do with his bowels," "NO CHELATION, EVER," and "You do NOT have the right to throw a pity party!"
- —Guest MRosenLIAutismExaminer
Response from Dadvocate: Specialists!
- Not sure what kind of Doctor or MD you have in mind. Diagnosis from a regular Pedia, Developmental Pedia, Neurologist, Psychologist, SLP, or Psychiatrist? Some of the above can provide follow on care for the child and some, like regular pediatricians, are often (or should be) jettisoned post diagnosis because many really don’t know much about the disorder and the need to address common co-morbid conditions like seizures, g.i. issues, anxiety and OCD, etc. If the provider isn’t qualified or in a position to provide care going forward, then steering people to knowledgable, experienced specialists in ASD is really the most important thing all of the above should do. It’s also helpful to guide people to online tools created by experts like the “Autism Speaks 100 Day Kit” and “Asperger’s Syndrome and High Functioning Tool Kit” (which are both provided free of cost) so families with newly diagnosed kids can fathom the roadmap of what’s typically ahead for them. The 2 kits can be found her
- —LJRudy
Response from Alexia: Support Needed
- Doctors, nurses, etc. should provide support — to see the child and the parents not just as a file, but as people first. The parents should know that it’s OK to grieve, and it’s OK to be angry. Parents and families should be put in touch with agencies/therapists in the area who can help them deal with the diagnosis and who can help their child achieve milestones. With autism the future is unknown…that’s the hardest to deal with. Doctors and staff should take this into account, and focus on what positives/gains the child IS making and build on that… The focus should not be on the “what ifs” or what the child can’t do. Therapy does make a difference.
- —LJRudy
Response from Malia: Details Please!
- I would like the diagnosis to be written out in detail, putting as many of the specific behaviors seen in the individual child into context relative to the DSM and other criteria used to come up with the diagnosis. This way, parents would have a better understanding of how their individual doctor came to their diagnosis and could potentially avoid a lot of speculation about what that diagnosis means for their individual child. I realize the doctors themselves probably have insurance concerns about providing such specifics to patients, but still… it would be nice. I see so many parents who express huge confusion about what the diagnosis means for their individual child.
- —LJRudy
A Packet of Hope
- I'd want to see: 1. local/regional contact info for the Autism Society chapter 2. detailed recommendations for specific therapies for my child, along with contact info for getting access to that therapy in the local area/region 3. sheets describing recommended therapies and approved adjunct options 4. if possible, names of recommended therapists or therapeutic institutions in the region 5. copies of "Autism for Dummies" by S. Shore and "Engaging Autism" by S. Greenspan 6. a SHORT list of websites with reliable info about autism, therapies, supports, prognosis, schools, etc. 7. And an invitation to connect with a well-informed, supportive "autism coach" who could answer questions, provide resources, suggest schools, or just listen to my concerns. Lisa (autism guide)
- —LJRudy
TACA
- Doctors should be handing out the TACA "Journey" guide - it has everything a parent needs. Well almost everything, as much as one book can provide.
- —AnneHShaw
