Getting Misinformation About Autism Spectrum Disorder

"We just discovered that our 8-year-old daughter has high functioning autism and ADHD! There is so much information on the Internet, and many suggestions seem to conflict with others. How do we know which path to take in raising our daughter given the challenges ahead?"

As a parent of a child with ASD [or High-Functioning Autism], you may often feel that you never get any clear answers, direction, or support. From the time that your child is diagnosed, you may be bombarded with information and ideas on what you should NOT do, what you SHOULD do, WHEN you should do it, and then be told that it is a BAD IDEA.

It is difficult to sort through this information and know if you are doing the right thing. This is why it's helpful to join a support group. Arm yourself with information and look to others to help you sort it out.

Support groups can provide a "shoulder to cry on" when the going gets rough -- both for you and your child. Unfortunately, many people don't want to join a support group because they feel that they're strong enough on their own, or they don't want to burden others with their problems, or they feel a sense of shame about the diagnosis and don't want anybody to know.

Support groups don't exist solely as a place to vent about your challenging circumstances; they offer a community of members who share a common interest, and whose members want to help each other out through the good times and the bad. Of course they are also a place to express anger and frustration, but they also are an environment to share the joys in life as well. 

Raising an child on the spectrum is both challenging AND rewarding! Having a group of people to turn to who have "been there -- and done that" when you need advice helps to reduce parental stress, and you may just discover a new best friend while you're there.

More resources for parents of children and teens on the autism spectrum:

==> Videos for Parents of Children and Teens with ASD



•    Anonymous said... Adhd stim. meds were a miracle; stop punishing and give warnings and super encouragement for every single great thing as well as points and rewards; redirections and be proactive to avoid situations; schedules; sensory awareness on my part and just accept some things CAN be done differently!!! And read and read and read online, join support groups online and go on Facebook every day!!! You're not alone!!!
•    Anonymous said... Check on to biomed treatments thru TACA. Our daughter is doing great.
•    Anonymous said... Focus on your child's strengths. She probably is very honest and great with systems - maximise on these skills. Don't assume she understands the basics with social skills - teach her step by step how to make friends, ask for help, take turns, read facial gestures and body language. She will also likely be very literal - explain to her black humour and sarcasm. She will be great - just keep reminding her what wonderful skills she has been blessed with.
•    Anonymous said... I suggest lose the labels and do what it is you feel works best. I followed a label all through my son growing up and all this created was a bitter 16 yr old.
•    Anonymous said... I'm right with you on that one, our son is 8 and was dx in January with high functioning autism(Aspergers) and ADHD and it has been so hard! The resources are not out there! I am feeling very helpless! Please let me know if you find something, we are in Western New York!!
•    Anonymous said... mine has aspergers ADHD bipolar & oppositional defiant disorder- they told me they dont even know what to treat first
•    Anonymous said... My daughter is 11. HFA and anxiety with a rule out ADHD.
We are treating for anxiety because it has made it hard for her to sleep or relax. She has Occupational Therapy which has helped immensely a long with a wonderful therapist we now see bi-weekly. (Was weekly).
More comments:

Anonymous said...
It's hard. My 11 year old daughter has the same diagnosis and 3 years later I'm still struggling to find what worlds for her. Finding a good school which will work with you and adapt to her is paramount.
Anonymous said...
Yes agree with the above comment re schools. My son has same diagnosis and is 14. The first year was rough with lots of changes etc but this year they know him, he knows how the school runs and teachers and I email constantly to keep on top of school work/ any behavioral issues!

Anonymous said...
When our 7 yr old Aspie was diagnosed last year I just read as much as I could. Sue Larkey also has great practical ideas. Too much info can be overwhelming but look at it as a kit bag and u just take out the tools that work for her. It can be trial and error as they are all unique.
Unknown said...
I have been in role of father to my now 11 year old grandson. He was 4 when diagnosed with Asperger's and later with ADHD and Sensory Integration Disorder. I was retired and dug into everything I could find. There are a lot of strong personal opinions out there about what works, often with the absolute belief that their approach is the only one that works. I recommend reading a few books by persons with Asperger's to get an appreciation for how differently they can see, hear, think and feel. Temple Grandin's latest book The Autistic Brain or others by her. John Elder Robison's website and book Be Different and his other books. Then note that there are some basic approaches such as ABA. This is touted as the gold standard but it is a behavior modification technique that doesn't resonate well with me so my daughter and I use RDI. And, I have found many other practical programs to address my grandson's specific issues like overexcitement, quick temper, etc. I'm probably out of space here but could obviously go on!

Unknown said...
I co-parent my 11 year old grandson with my daughter. He was diagnosed with Asperger's when about 4, then ADHD and Sensory Integration Disorder later. I was retired and immediately dug into everything I could find on Asperger's and anything related. It is very confusing since people seem to be very passionate about the approach they are using where biomedical, ABA, or whatever. I recommend reading books by persons with Asperger's to get insight into how differently they see, hear, think, feel and experience the world. Temple Grandin's latest book "The Autistic Brain" or others. John Elder Robison's "Be Different" or others plus his excellent website. Then take every approach to helping kids with a degree of skepticism and find what seems to work best for you, what seems most valuable and practical for you. I personally have a reservation about ABA as a behavior modification technique and RDI appealed to me. So my daughter and I have been using RDI. My also uses it some but gets to be more of a grandmother. I have found specific programs to help with facets of his challenges, such as over-excitement, quick temper, social skills, etc. I agree about finding the right school but you can't turn over responsibility remediation to others. I could go on but space must be limited here!

Unknown said...
Same here, 8 year old girl - high functioning autism and ADHD, throw in auditory processing disorder for good measure....I found elements of 123 magic helps but nothing worked like ADHD meds did....changed our lives. I am a single mum who works full time....I find breakfast and tea club's at school help tire her out as well....I hope you get the answers you need. I won't go by support groups but if it's your thing then give it a try

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