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

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Wouldn't that require that there be teen and adult autistics in the area willing to meet total strangers?

You're right, though.

Since I actually was given a pamphlet, I tried to find it so I could quote from it. Couldn't find it. It wasn't that helpful anyway since by then my strong suspicions had caused me to buy a couple important books. "Quirky Kids" by Dr. Perri Klass was at the top of the list.

Here's what should be in the pamphlet. I can't remember what actually was.

1)A description of the autism spectrum

2)Uplifting words about growth and development along with as un-scary as possible words about possible challenges.

3)Since the child is 3, they are about to enter the school system (f their parents are sending them to preschool). The next part of the pamphlet should be about educational interventions and how to approach the school system. I don't know about other countries, but an American 3 year old with an autism diagnosis can start getting speech therapy, physical therapy and occupational therapy as needed through Early Intervention. There needs to be a contact name, phone number and address for the local Early Intervention group.

4)websites of local autism organizations and also websites about the public school system's role in intervention: www.wrightslaw.org

5)suggested books

I have to strongly disagree with this. Yes, 40 hours of ABA a week (or maybe even any ABA) will do more harm than good. But a parent who is directed to the special accomodations given to 3 year olds via Early Intervention will not be offered that. They will be offered (non-ABA) speech, occupational therapy and physical therapy as needed and integrated preschool free of charge. Integrated preschool is public preschool that mixes kids with disabilities (many disabilities, not just autism) together with non-disabled kids in a mix that is close to 50/50. The disabled kids are free of charge. The non-disabled kids (parents) pay tuition.

I think that integrated preschool is such a wonderful thing that it is an intervention well worth trying even if the diagnosis turns out to be wrong. After all, half the kids going to the preschool have no diagnosis at all and it isn't harming them any. When my daughter went through this, the waiting list for non-disabled kids was very long (and that was with tuition) because so many parents wanted their kids in the program, disabled or not.

Hi - I think this is so true. When our now 8 y/o child was diagnosed with autistic spectrum disorder, we didn't get any real help in managing the whole situation which was quite bewildering. I still don't fully know how to help or understand him properly. On top of that our older son may have Asperger's, and the two wind each other up so much. I really don't know them sometimes! Our household is not a calm one overall, and I would really love that.

I think the pamphlet should try to explain how autistics think differently compared with NTs. I've had lots of problems as a kid(still have some thou) cuz I take things literally & parents think I"m being rude when I'm not. The pamphlet should try to explain things from the autistic kid's perspective that way the parents can have a better idea of how to relate

What's with the distorted candles, do they signify death? That's strange and disturbing. I don't see autism that way, I see it as a gift.

What distorted candles? Sorry if I'm missing something obvious...

Just to clarify, since some of us, being Aspies, don't do so well with hypothetical situations ^_^ :

When you say "pamphlet" you're just mainly referring to a summary or brief rundown of verbal or written information, just the very most basic of information that a lot of parents don't hear, either because they're not told or because they're too busy wading in IEPs and ABA and hours upon hours and pages upon pages of technical jargon...is that anywhere near correct? At first I took your question very literally and some of the responses started not making any sense...so I thought about it that way and it seemed more applicable. So just making sure I understand your question.

Being that I am in upper-level SPED licensure courses with a decent amount of field experience and also in the process of being diagnosed with Asperger's myself as well, I have seen that for most parents the information they need is sometimes the most obvious, yet oft-overlooked. Like I stated above, there is just so much information the parent of a newly-diagnosed autistic child is hit with when the diagnosis is first made, on top of having to get used to a (sometimes) totally different lifestyle than they always imagined for their child. Also keep in mind that the general population has a "Rain Man" view of autism and just simply lacks awareness that spectrum disorders affect people in a wide variety of ways and aren't confined as diagnoses for low-functioning savants. (Not an inferior part of the spectrum at all, of course, but definitely only a small bit of the diverse autism picture, as all of us here are aware.)

So basically, I think the most important things to be covered are:

First, as others here have said, that AS is a very diverse syndrome and has a wide range of manifestations, so only in working with one's child, family, teachers, and any other professionals that may or may not be needed can one really find out what works and what is right in making the child's life and the parent's life as smooth, fulfilling, and generally happy as can possibly be. There are lots of support groups, trained professionals, educational resources, etc. in general at one's disposal, but every situation, and every child, is different. Children on the spectrum have a diverse range of personalities, IQ levels, talents and skills, and social functioning levels, and can only be properly addressed on a case-by-case basis.

Second, though the spectrum is very diverse, as I mentioned, there are certain traits, characteristics, and potential obstacles that are, for the most part, consistent across the spectrum. The extent and areas of effect are diverse, but certain traits remain consistent that the parent needs to be made aware of. Traits such as special interest areas, the role routines and consistency plays, sensory perception and response, and some degree of social/communication differences should be briefly described in a general manner, as well as suggestions as to how to find the best way to assimilate these traits into the lifestyle (rather than try to stop, curb, or eliminate these traits that are just as much a part of the child as his or her eye color or blood type and usually just as easily changed).

Briefly, the parent should be warned against two opposite but equally erroneous responses: To treat the child as inferior or...well, "ret*d" as a result of the diagnosis and allow the stigma to stunt not only the development of the child but also his or her self-perception and self-worth, or to go the reverse route and pretend that absolutely nothing changes in light of the diagnosis, which may make life unbearably stressful for the child in light of his or her differences as well as for the parent and all other family members and educators. Finding a balance of viewing the child as an individual with equal but different strengths and weaknesses, and adopting a lifestyle that accommodates these differences is a good goal for the parent to start out with.

I think the last thing that should be mentioned is that an AS diagnosis isn't a negative thing, and that the child just has a different way of processing information and communicating with others based on a physiological difference, regardless of the overall functioning level. The unfortunate negative stigma, as one poster's father bought into, is based on a generalized perception of the worst-case scenario and comes from simple lack of information, which could be dissolved by simply providing said information in a basic and obvious way.

These points are kind of repetitive of others in the topic, so I apologize for any redundancy. That's my two cents though. ^_^

The distorted candles in the picture, on the top of the page, that are off centre.

Are you sure they aren't just squiggly novelty candles?

Maybe that's what they are.

That picture does look sort of creepy, but I took it as a sign of how bad something like DAN! is, rather than a sort of "death to autism" message.

Or maybe it's supposed to show how different things can look to a kid with autism? After all everything else in the room is normal, it's just the candles he's blowing out that are different.

What I'm trying to say is that intervention may not be necessary, dependent on the way the child develops. Any kind of intervention too soon could cause harm. If the child truly needs something like that it should be fairly obvious when, it should be something done just as a preemptive strike against natural development. Since the degree of which is not specified within the prompt I cannot give a specifically tailored opinion to the situation so I can only really use anecdotal information in my examples. I can't really say anything on the topic of the "integrated preschools" you speak of since I have honestly never heard of/about them and can only assume the nearest one is probably between 75 and 150 miles away from me in a place of semi-reasonable population.

I was not diagnosed until I was either 13 or 14, as such I went through school up until then as most other children would, in my first few years (up to 3rd/4th grade) there were some things that were seen by the teachers/staff as different (I can't really give clear details on it as I was too young and have only heard the information through my parents.) at that point they started doing brief therapy sessions with me in school, mostly in relation to my writing and verbal communication techniques as well as some physical. I can only remember these as obscure, horrible situations that only served to make me feel as if there was something wrong with the way I was. (To be honest, I can see why they did it with the writing though, upon graduating this year I got a letter from my 3rd grade teacher with a paper I filled out at that time, my writing is now actually more illegible than it was then, then again I refuse to print so it all balances out.)
Continuing with special accommodations, upon being diagnosed my parents explicitly did not tell the school about the situation as they knew that they would put me in the "special needs" class which is, to put it bluntly, the ret*d class, which would most definitely not be catering to my needs. I won't get in to the other things that come with that label. (moving on now...)


That is indeed what they are, as there is no distortion in the picture other than the horizontal blur which could easily be caused by an unsteady camera hand.

(Hmm, do I overuse parenthetic asides?)

I could add that on.

This is the most helpful thing that I learned when I was first diagnosed. It's a quote from T. Attwood:

"...I have discovered a means of removing almost all of the characteristics that define Asperger's syndrome...The procedure is actually rather simple. If you are a parent, take your child...to his or her bedroom. Leave the child alone in the bedroom and close the door behind you as you walk out of the room. The signs of Asperger's syndrome in your son or daughter have now disappeared."
[Complete Guide to AS, p.55.]