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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

 
COMMENTS:

•    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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Calming Techniques for Aspergers Children

"How do you deal with an Aspergers child (age 5) who frequently has severe temper tantrums whenever she doesn't get her way, for example, can't play here favorite game 24/7?"

Click here for the full article...
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Choosing the Right School for Your High-Functioning Autistic Child

"We are trying to decide between a traditional school setting and a special school for our 6-year-old son with high functioning autism. What are your thoughts?"

Choosing the right school for any child can be a challenge, but finding one for a son or daughter on the autism spectrum (i.e., high-functioning autism or Asperger's) can create some real anxiety in parents. Every child deserves a good education, and the law provides that children with "disabilities" - including Autism - be educated with teachers trained in handling such challenges in practice; however, finding good teachers isn’t always easy!

Parents must decide whether or not their child will be best managed in a mainstream school with a high rate of contact with "typical" children, or in a special school where the chances of the child coming in contact with mainstream children is considerably less.

Special schools may have better educational programs for children on the autism spectrum, but may not provide enough positive role models of more ‘normal’ behaviors. Some people also feel that special schools can encourage kids to mimic other children with similar problems.

Choosing the right school most definitely involves a visit to the school and a talk with the teachers who will be teaching your child. Here are some questions to get answers to:
  • How integrated will the child be in the classroom?
  • What techniques, such as music therapy, are utilized?
  • What is the plan for reducing arousal if necessary?

Younger high-functioning autistic children will need very small class sizes with early education so that when the child reaches school age, he or she may be more integrated into the classroom. The ‘right’ school understands Autism Spectrum Disorders and has methods in place for teaching special needs children. They carry a positive attitude about the disorder and place expectations on your child for progress, in whatever way it occurs, in the school setting.

The main task is to find a school where your child’s special needs will be addressed and where he will learn important social skills from other children.



COMMENTS:

•    Anonymous said... A public school can be good if there is a teacher there who understands and knows how to work with high functioning autism kids, otherwise I would wait till the child is a little bit older. At least till the age of 8, it seems like that is when they come into a bit more of their own.
•    Anonymous said... depends on the public school...mine is amazing!
•    Anonymous said... home ed
•    Anonymous said... I agree that it depends on the school system. My child is on the HF end and has done well in public school. It has its challenges. But it was the right decision for our family and his needs.
•    Anonymous said... I found the school system to be quite horrific for my Aspy. I've been homeschooling him for 18 months and the change in him is amazing.
•    Anonymous said... I highly recommend homeschooling.
•    Anonymous said... I would recommend a school that specializes in Autism. My daughter was enrolled in several different public schools and continued to fall behind and had melt downs at least 3 times a week. I enrolled her in a school specializing in Autism and now she's excelling. She has AS. Being most kids enrolled in this school have AS or some other unique trait there are no bullying which my daughter endured daily at public schools. Good luck with figuring out what's best for your child.
•    Anonymous said... It definitely depends on the school district. We do not have a very good school district for special needs kiddos, and I pulled my eldest out to homeschool when he was in preschool. Homeschooling has been amazing for our family.
•    Anonymous said... Mainstream has its own nightmares!My son is struggling to get the right support from his teachers as they think he is perfectly capable of taking instructions as the other 10 pupils in his class.. --They say if he fails ( he is an A student) then its his lesson to learn harder!--actually his work from school is non existant and no communication from his teachers assist with this problem. They leave him to his own choices and it results in CHAOS!--so, special school system where there is ample support sounds more positive to me at this moment. Homeschooling even better as the pressure is less and children can master their own learning methods in a safe environment--according to their learning style.--less headaches!
•    Anonymous said... Make your public school pay for an autism school. Our son was fine in a gifted school program until 5th grade. We had a hard time getting him properly placed, but he's in an appropriate setting now. Private school paid for by the school district. They bus him 20 miles each way, too.
•    Anonymous said... Megan Keller Homeschooling our Aspergers, ADHD, ODD, etc. is a group where many of us got tired of the bad options and are trying it on our own.
•    Anonymous said... mine were all at public/state schools,but all have no learning difficulties,reached mile stones early,try the state school first,
•    Anonymous said... My 14 yr old high functioning son is now in yr 8 in mainstream school. The last 1&1/2 years has been the most frustrating and horrific of my life. School started off great as there were supportive teachers and lots of understanding being offered. But as soon as my sons inability to keep the personal space boundary didn t work or he didn't want to do sport or sit in a chair he felt was wrong, all the understanding went out the window. He looks normal and seems normal until something isn't wright for him and he has a meltdown. The teachers didn't want to understand him then and thought he was being difficult. He's been suspended 3 times and and had numerous pre suspension letters home. If they had true acceptance of him he wouldn't of been suspended once. I recommend putting yr child in a asd school if possible. My son is now in an all boys school as he didn't mix with girls at all. They picked on and bullied him every chance they could. He's not interested in anything sexual at all as you would know but the girls would cry a sexual harassment claim and wed have trouble again. And my poor boy would say "mum I don't understand what they are saying I did. " And then I'd have to explain what some horrible sexual term meant to an innocent mind. Horrible.
•    Anonymous said... my son is at a public school and is doing well, but you would need to look at the specifics for your circumstances - we have no special school here and the public school is a rural school down our street with 130 kids whose families I mostly know and the teachers know us and our circumstances and work together with us...
•    Anonymous said... Steph, that is good to hear, because we are going to begin homeschooling our freshmen this year and we are believing that more opportunities will open up for him. Not a discipline problem, but a too quiet and wont speak out against others who have wronged him. So we think he will really enjoy learning again.
•    Anonymous said... This was our first year trying Connections Academy and it was good. I was able to let my son go at his own pace, which was great because he struggles with reading comprehension but whizzes thru history and math, until the school began the dreaded state testing prepping. Then things quickly became a headache because they added on additional "practice" classes that interfered with his regular courses and we had to hustle at the end to get everything completed on time. We began the school year with smiles and ended in tears. So, after many nights of prayers, we've decided to go with homeschooling and I already feel a weight lifted off my shoulders.
•    Anonymous said... we go the traditional schooo method for our 12 year old with PDDNOS, he has an IEP, and an aide.
•    Anonymous said... We just finished a school year with a K12 online public school. We are doing it again! I think it's a great opportunity for families such as ours. Our soon to be 8 year old can go at his own speed in the subjects he likes and take a bit longer in the ones that he struggles with. We can control the environment, etc. Of course, one must take in consideration of appropriate social skills so our kiddos all participate in extra curricular. Tae Kwon Do has been a particular benefit for our kiddos with poor motor skills, not being able to compete well, low confidence etc. He's around kids and has to cooperate but he's not really competing with them....and boy oh boy his physical activity stamina has really come along in the last 2 years!
•    Anonymous said... We tried public k-1st but unfortunately because of her very bad behavior mostly brought on by sensory issues she just wasn't able to cope. The teachers were doing the best they could but basically she/ they were just trying to make it thru the day with out hurting herself or others. So this year I will try home schooling.
•    Anonymous said... Yep. Depends on the public school - where my son goes is amazing too - the whole staff works together and teams together to make school a good productive experience for my son!

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High-Functioning Autism and Bullying

Children with High Functioning Autism (HFA) and Aspergers, unfortunately, are at a higher risk of being bullied or teased than other children. This can happen on the playground, in the classroom - and even in your own home.

Because many HFA children have some social and communication difficulties, they often can’t tell adults exactly what is happening. Thus, parents and teachers may have to consider bullying as a cause when certain behaviors occur or worsen in the child.

Click here for the full article... 

Highly Acclaimed Parenting Programs Offered by Online Parent Support, LLC:


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Building Self-Esteem in ASD Children

"My son is often very critical of himself. He will make statements like, 'I'm dumb' or 'I can't do anything right.' How can I help him feel better about himself so that he stops putting himself down all the time?"

Many children with ASD level 1, or High-Functioning Autism, struggle to accomplish tasks of daily life that are relatively easy for other children. While they may not show it in the same ways as other children, ASD kids struggle with self-esteem issues as much or more than kids without the disorder.

Kids on the spectrum often don’t respond to things like hugs, but they can build self-esteem in other ways. One way to build self-esteem is to use a sticker system. Use a board that lists your child’s tasks (e.g., brushing teeth, dressing, eating meals, etc.), and help your child put stickers on the board whenever he or she is successful in completing a task.

Another way to build self-esteem is to use a reward system that involves being able to do a preferred activity when the child is successful at something (e.g., reading a preferred book, doing a preferred activity, etc.). This works best when the child can link a successful task to the reward system.

Even though children with autism don’t often respond to the same kinds of praise as other children, giving praise is a natural thing for parents to do. Praise, when given as part of the completion of a task, may still increase self-esteem if it comes from a familiar person who they have come to trust. It becomes not the praise itself, but the person from whom it comes that is the reward.

Children on the spectrum don’t look like they need "self-esteem building" at times, but in fact, they do! Parents need to find ways to teach their child that he or she is successful at what they do.
 



 
Resources for parents of children and teens on the autism spectrum:
 

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


 COMMENTS:

•    Anonymous said... a lot of times my boy will say "all parents say nice- stuff about their kids" It's hard to cut thru the lack of acceptance of his peers...
•    Anonymous said... Camp Kodiak!! I worked there for ten years and they do an awesome job of giving the kids the chance to be successful and that goes a looooong way to building up their resilience for life (aka the school year!!)
•    Anonymous said... everytime I try to correct her.......
•    Anonymous said... Give him constant feedback on how well he did a task, or when he achieves something. My aspie sometimes says "you know I'm stupid" and I have to remind him how bright he is. Lots of hugs help too!
•    Anonymous said... I tell my 8 year old daughter "A professional was once a beginner. Don't give up!"
•    Anonymous said... If our son get frustrated - he will hit his head and say "my stupid brain"
•    Anonymous said... It is SO heartbreaking to hear my son say things like this. We've been to CBT (cognitive behavioral therapy) and it's helped some. What I've learned is that it's really important to point out the good things as they happen. "Wow! I really like how you..." or "You're really good at..."
•    Anonymous said... I've heard this from my son as well. Usually, it's in response to something that was said to him that hurts his feelings (even though that was not the intent by the person saying it). When I've been the cause (or another member of the family), I make sure to take the time to explain to him the real meaning of what was said so he understands it wasn't to harm him. Of course that doesn't work in school - he seems to always take things in a way that wasn't meant so it's hard. Hang in there!
•    Anonymous said... my child does that too especially when she was in school, not so much now as she doesent have to compare herself to anyone
•    Anonymous said... My eldest did that and we made a rewards board in his room, any certificates, merit awards ribbons that he got at school at sports, even if it is just to say he played as part of a team, went up on it and that way he could visually see that he was an achiever.
•    Anonymous said... Ours always says things like "Awww man why do I always forget!"
•    Anonymous said... Thank you thank you so much for always posting timely, relevant articles - they mean so much to us, trying to help our children!
•    Anonymous said... we do a wow book each day what good thing happened to me today. What did I do well. No negatives. Lots of positive praise.

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