’100 Day Tool Kit’ LIVE Facebook Conversation
Thanks for joining the chat today!
We apologize for our technical issues!
Today’s chat will focus on supporting families whose child has been recently diagnosed with autism. Most parents wonder: What do I do next? Where can I learn about the diagnosis? How will this affect other family members? Today, we want to help answer these types of questions. We expect to get more questions than we are able to answer, if you still have questions after the chat, please contact the Autism Response Team at 888-288-4762. Thank you for your participation in today’s chat!
Comment From Jennifer
Should a child be on an IEP if they have aspergers?
Yes, every child who has developmental concerns should have an IEP involving assessment that determine the child’s strengths and weaknesses
From there recommendations can be made to support the child in an educational program
Comment From Guest
My child is being tested for Autism…He is 2 1/2. What should I expect with the tests?
Good diagnostic assessment treat strengths and weaknesses including language, cognition and other skills
This will be very important in setting goals and intervention plans
Comment From Guest
my grandson is almost 3 and I’m sure is autistic yet his parents won’t acknowledge it at all!! He needs help
This is a very common concern of grandparents
Sometimes it is difficult to know how to approach the parents so that they are open to taking the next steps
One approach is to recommend to the parents to get an evaluation
If there isn’t anything there, they can let it be. But if there is something, the child will benefit from early intervention
It might be good to suggest to them that you will accompany them to the assessment. The more support the better!
It is also good to give them time to process, but not TOO much time where the child loses the benefit of early intervention
Comment From Jesse
My neice has Autism and Im wondering will she ever be able to function in the world when she gets older?
It is well known that all children with autism make developmental progress
In terms of how much or how can not always be sure. It is up to the family to make sure the child gets high quality intervention and is in the correct setting. The more support the child gets, the better the outcome.
Comment From Traci
I have sent 2 messages and they never show up
We are trying our best to answer everyone!
We are so happy that you are all here and asking questions
Comment From Sandy
We’ve just been diagnosed yesterday. Our 5 year old son has ADHD and PDD-NOS. Our concern right now is that every resource around here has a 2-4 month wait period. I’m wondering what we can do now before the socialization groups are accessed.
Have you ordered the 100 Day Kit?
Here is a link, where you can download it for free
You may want to ask the professionals who evaluated your son what you can do at home in the meantime
The more the parents are involved in intervention, the better the outcome
Stress to the professionals that you need training on how best to intervene
Comment From Brandi
HELP! Trying to decide between ABA therapy and floor time therapy. Pros and cons???
In this case, you must ask, in what therapy will the child make the most progress?
Again, this comes out of good assessments in finding what the child’s strengths are
Based on that you should be able to pick the appropriate intervention that will garner the best outcome
Comment From Jennifer S
We are about a month past our First 100 days and I wanted to thank you for our First 100 Days Tool Kit. It is priceless and an amazing resource. I carry it with me everywhere just to show people how amazing Autism Speaks is! Its a great way to get people excited about the walk, it shows where the money goes!
Thank you SO very much!
Our Mission At Autism Speaks, our goal is to change the future for all who struggle with autism spectrum disorders.
We want that kit in the hands of every parent at no cost
Families can call 888-288-4762 to get a hard copy of the kit
We love how valuable the kit was for you
Comment From Cynthia
How can I explain my 5 year old that his brother has autism??
It is very important that parents explain to siblings that their brother or sister has autism
It is important to spend time talking with them and explaining what it means
It is also important to listen to their concerns without judgment
It is important that you establish the groundwork for an open communication
Let them know that is is okay to ask any questions and you will be there for them
The hard part is finding out what age appropriate terms you should use
I suggest you check out our resource library
We have lots of books that explain all of this to siblings
Comment From Emilio
Hi everyone! Our 3 year old was diagnosed with High Functioning Autism at 2 years and, even before then, we knew something was different due to several milestones he was not making. We immediately began Early Intervention, At-Home Teaching and Training and now, because of our great community-based EI, OT and ST organizations, Artie is doing fantastic! He has made so much progress and is even enrolled in an ELP class and has fully integrated with Mainstream Students! We are SO proud of him! I cannot emphasize enough how important Early Intervention is and how important it is to work with your child at home!
I cannot emphasize enough how important early intervention is and involving parents.
THEY ARE KEYS TO SUCCESS!
Thank you for inspiring other parents with your successes
Comment From Patty
What type of doctor is most qualified to make a diagnosis? Have been to 2 neurologists and still not completely comfortable w/their diagnosis.
Starting with your pediatrician, you should be able to get a referral to a developmental pediatrician, neurologist, or psychologist
Because autism is a behavioral disorder, it is diagnosed through observation
and a careful history of the child
It is important to get a second opinion if you have additional questions about the diagnosis
There is no ‘one siz fits all” for autism spectrum disorders
Different professionals can see the child differently
Again, another reason to have more than one opinion.
Also keep in mind that no one knows your child better than you!
it is important to bring a support person with you to the evaluation to be sure you are hearing the same information
Then you can discuss this with the support person after the session. It can be very overwhelming and hard to absorb
Comment From Marilyn
Hi my Daughter is 8 years and she just been diagnostic with autism
Although this may considered a late diagnosis, you are welcomed to call and get the 100 Day Kit
It will help you still!
Comment From Guest
How do I know the severity of my child’s Autism?
The process of doing an assessment when developing an IEP will provide us with a description of strengths and weaknesses
From there you will be able to set appropriate goals and intervention plans
Although many different healthcare professionals can diagnose autism, it is important that more than one disciplines be involved in assessing your child
This may not happen at one visit, but the professionals are communicating their prospectives with one another
This includes psychologist, OT, speech and language therapist, pediatrician, specialty physician, etc.
The value of these assessments is that the family take back information to the agency or school district so that the agency can better understand the child and advocate for them
Comment From monica
iif a child has been diagnosed by doctors saying he’s pddnos but the school says different. what should I do?
There are differences in opinion with diagnosis
It all traces back to the assessment process and understand those differences and why they exist
I would recommend that professionals speak to one another about this issue
Comment From Matt
I have a problem with the concept of stimming
Stimming is often considered odd repetitive motions that can be very apparent or more subtle
Unfortunately these behaviors can be very persistent and intense
The important thing is to understand that the behavior and consult with professionals in order to minimize the behavior that may be interfering with the child’s functional ability
The idea is to get help to manage the behaviors
Comment From Brian
What symptoms can we look for in a child who may have autism?
The big three areas are communication, social symptoms, and repetitive behaviors
We have a page that goes into more detail on each
Comment From Guest
my brother has autism and i was wondering does autism children have picky diets??
Many people with autism are picky eaters or have aversions to certain foods
A great way to work on nutrition is to set up a regular structure for meal time
In that mealtime, include at least one food that your child has eaten in the past and liked
BUT also include a food that your child or sibling may have an aversion to
It’s a good idea to start discussing this with your family pediatrician
It is important the individual with autism is getting the right nutritional intake
Comment From Rhonda
Please explain what things like PDD-NOS mean. Thanks
It is a form of autism spectrum disorder that meets the criteria that of a person with social difficulties, but not in both communication and restrictive repetitive behaviors
It can also be used to diagnose children under the age of three that don’t have clear difficulties
Comment From Sarah
how often should children be re evaluated?
This is a really good question
Typically children get evaluated annually through the IEP process
As parents you have a right to call an IEP meeting at any time
You can discuss your concerns – this may include an evaluation. That should be considered by the IEP team
We recommend parents work closely with their pediatrician and if parents have concerns, the pediatrician can support them in getting their child’s needs met
Comment From AnQi
is the 100d ays kits free of charge?
Anyone can download the Kit for free
You can request a hard copy of the 100 Day Kit by calling 888-AUTISM2 (888-288-4762). Parents of the child must request the kit.
We are so happy that we’ve had all of these participants, but are so very sorry we haven’t been able to answer everyone’s questions
You ALWAYS have the options of calling the Autism Response Team to speak to a coordinator at 888-AUTISM2 (888-288-4762).
It is so important that you all chose to come here to ask questions
By asking questions, you are providing vital stepping stones to ensure your loved one with autism has a successful future
Having a child with autism requires that we are comfortable doing more for our children
Active intervention on our part is a way of life!
Here is how you can get a kit
The 100 Day Tool Kit is available to download for free at:http://www.autismspeaks.org/family-services/tool-kits/100-day-kit
Aspergers /High Functioning Autism Tool Kit
Manual de los 100 Dias
Parents whose child has been diagnosed in the last 6 months may request a complimentary hard copy of the 100 Day Kit by calling 888-AUTISM2 (888-288-4762). Parents of the child must request the kit.
The 100 Day Kit is broken down by sections
1. About Autism- what to expect, define autism, what causes autism, prevalence2. You, Your Family & Autism- your family- addresses the family’s reaction to their child getting diagnosis, what you and extended family can do
3. Getting Your Child Services- navigating Early Intervention agencies, educational system,etc.
4. Treating Autism- different approaches to treatment, How is autism treated
5. Making It Happen-assembling your team, books ad websites
Action Plan for Next 100 days
Autism Safety Kit
Your local resources- Resources form RG: includes local resources: State Info, Schools, Waivers, Local Autism Orgs, AS Communities
In addition, another great resource is the Autism Video Glossary
Online video glossary to help you identify the early signs autism I young children
Glossary contains 150 video clips, available free of charge. It helps to understand words and terms used to describe autism. It also showw examples of social reciprocity, Joint attention, Sensory defensiveness
Thanks again so much for being here – we look forward to the next chat with you!
Your advocacy truly makes a difference and we look forward to a future of open dialogue!