What should a parent of a newly-dx'd Autie or Aspie know?

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I was considering putting this in the Autism Politics forum, but I figure it could fit here too and it'll get more traffic here.

So... picture this. The summer is hot, but the doctor's office is air conditioned. A mother sits listening to her three-year-old's pediatrician, while the toddler spins the wheel of a toy car.

"Mrs. Surname," says the pediatrician gravely, "your son has autism."

Dramatically, as if in an old movie, the mother clutches her chest. Tears well in her eyes and her mouth opens in shock. "No," she gasps. "Not my boy!"

"I'm afraid so." The pediatrician gives her a sympathetic look, sending magic comforting eye-beams straight into her soul in that mysterious manner so common to NTs. "This pamphlet will help start you on your journey."

So. Help me out here. What's in the pamphlet?

Our pamphlet contained brief information about how we tend to behave, what parents should be aware of, social clubs for Aspies and parents, etc.

Kind of off-topic, kind of not, I'd like to see what's in the "pamphlet" for spouses of newly-diagnosed Aspies, particularly the husbands of female newly-diagnosed Aspies.

Firstly, THANK YOU for getting the diagnosis on your son so early. If my parents had done this my life would have been a lot easier.

Now, all I can suggest is that you work with the professionals. You don't have to accept all of their advice at face value and if something concerns you then feel free to argue the point because every kid is different and some things may not work. Above all please remember that autism is not a death sentence, I've lived with autism for 52 years and I now live a reasonable life in comfort.

As for what's in the pamphlet, I would hope that it gives a description of autism and AS in terms that a lay-person can understand. The Wikipedia page on AS is reasonably good but there have been some arguments about specific content. Any more questions? Feel free to ask 'em because that's what we're here for.

Vanilla_Slice

I think it is very wrong for a doc to simply give out a pamphlet & send the parents on their way. The docs should be trying to contact social services & other programs that could help out. If the kids are in school or are getting ready to go to school; the docs should be putting together a list of recommended accommodations for the kids as well. The docs should be pointing people towards help instead of simply giving em a diagnoses. Each person & situation is different & there is NO way a pamphlet is going to cover everything. Docs should be giving out suggestions about what to do next

Vanilla...

It's a hypothetical. I'm a high school student. If I have an autistic three-year-old, I'd really like to know, 'cause he'd have to be Jesus Christ.

What I'm asking is... what's most important to explain? What's the first thing a parent needs to know?

Because we have a serious image problem and it would be really helpful if we could reach the parents of those who do get dx'd as children. Maybe it's too hard to fight the JRC, maybe it's too hard to fight the schools ourselves. Maybe it's too much to ask of us to fix the damage once it's done and the child has become a maladjusted adult.

Maybe it would be easier, more effective, to keep it from continuing. I think we can all guess that they need a description of autism in layman's terms... but what should be emphasized? What's most immediately important to an NT parent? What information will convince them that their child is a human being, and that cruelty is cruelty even if the victim can't speak? What will calm frazzled nerves?

Nick, I concur, but that's not what I'm getting at. I'm not saying the doctor shouldn't try to help. What I'm saying is, what's the "your son has autism" elevator speech?

I believe one of the most important things that should be included is something about special accommodations not being made until it is certain they are necessary or else there is a possibility of doing more harm than good.

NEVER let yourself get too comfortable. Right when you think things are going well, or settling into a calm, workable routine....something will go awry.

I'm not sure how realistic your hypothetical diagnosis scenario is. Although that might be the case for some, it certainly wasn't for me and my son.

His diagnosis took place over a year after referal (at which point leaflets were provided with basic info about ASDs, contacts for NAS, local groups, and family support worker etc). The diagnosis took place over a six week period and involved the school, the ed psych, my son's existing Speech and Language Therapist, in addition to the two Specialist SLTs who did the assessing and wrote up the final report. The final report was the subject of a meeting, at my son's school which lasted over 2 hours and every item on the report was discussed in detail. At that meeting I was given a bulky folder full of information about Asperger's and autism, contact points, NAS training courses, clubs and play events for children with AS etc.

Even before my son's diagnosis I was invited to attend 4 evening sessions organised by Speech and Language Therapists for the parents of children with AS.

So, by the time my son was diagnosed, I was an expert on AS!

To the OP, have you asked diagnosing professionals in your area what written information is provided to parents when their child is diagnosed, and requested copies for information?

If the pamphlet was written by me, this is what it would say

1. Autism is not a horrible disease or illness. It's just a different way of being.

2. Most people with autism do not wish to be cured.

3. Just because your child isn't or wasn't completely potty trained by his or her third birthday, does not mean that your child is slow.

4. Your child might speak with an unusual accent. That is okay.

5. If your daughter wants to look and dress like a boy, or a man, let her. It's her choice.

6. Your child will have special interests. That might be all that you hear them talk about, or engage in. Don't chastise your child for doing that, or he or she might grow up, feeling like a freak. Don't talk about special interests and obsessions in a negative light, or else you will learn the hard way, like my parents did, with me.

7. If your autistic teen or adult likes the 60s, 70s, 80s or 90s, than let them. The music from their favourite era is a nice break for them, from Top 40, which reminds them of the nightmare called High School.

8. Meet with autistic teens and adults, and get to know them, and get some insight. The best way to learn, is from the people, who are on the spectrum, themselves.

A link to this site here -> The Thinking Person's Guide to Autism

In the pamphlet, there should be information on services available such as A.B.A., O.T., S.P., etc. The pamphlet should also explain that many of our worlds inventors and musicians were autistic and provide helpful as well as hopeful information. The pamphlet should also give information on where to find teaching techniques for autistic students

Thanks, everyone.

I'd like to hear more responses, though. I want to see the point at which you start repeating yourselves.

Marcia, I'm sorry it's not a plausible scenario. It wasn't supposed to be, though. (And here I thought the "magic eye beams" part would make that clear.)

I think your pamphlet should include an invitation to a meeting with teen and adult autistics. There's no fear worse than the fear of the unknown. If parents knew what we were like, and that the problems we face can be solved, they wouldn't freak out so much.