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5 Online Autism Support Resources For Parents


Raising a child with autism can be a tough but rewarding job. As a parent of a child with autism, you know that teaching certain basic tasks can become challenging, and sometimes, it’s easy to get frustrated with a lack of progress or understanding on your child’s part. We’re here to tell you that you’re not alone, and there are online resources available specifically for parents of autistic children.

These five websites are run by professionals and parents alike and provide support groups, information on the condition, as well as learning tools and other helpful resources. You don’t have to take this journey alone! There are thousands of parents just like you connecting every day that can offer tips, guidance, and support. 

1. Supportiv

When the days become overwhelming and you find yourself full of frustration, sometimes you just need to vent and get it all out. But where do you vent without facing judgment? After all, being a parent of an autistic child carries with it certain (if not unreasonable) expectations like extreme patience. Let’s be honest; we’re all human, and sometimes, things get the better of us.

Supportiv is an online chat and mental health site where you can connect and chat anonymously about pretty much anything that’s on your mind. If you don’t want to turn to friends and family with your frustrations, this option can offer a perfect alternative.

Everything is completely anonymous, and the chat rooms are moderated so you won’t have to worry about facing judgment or cruelty from anyone online. Stressed? Overwhelmed? Tired? Tell us all about it at Supportiv! Connect with others who feel the same way, share stories, and find the support you’re looking for with this growing online community. You can also take a look at the blog for further resources on mental health.

2. AutismBeacon

This autism resource site was started by a parent of an autistic child, so it’s already coming from a place of empathy and understanding. You’ll find resources on sensitive subjects such as bullying and sexuality that are often avoided in other spaces because of their controversial nature; but these are topics that still need to be addressed, even with an autistic child.

The site provides resources for advocacy, awareness, treatment, and more. If you’re a new parent of an autistic child or someone who’s been looking for a larger, more information-rich autism awareness community, you’ve found it! Visit http://autismbeacon.com/home for more information.

3. Autism Speaks

For new parents confused about what autism is, how it affects daily life, and what options are available, there’s Autism Speaks. This website is designed to provide parents with support via an Autism response team to help answer all of your questions, information on providers and treatment options, and even info on autism-friendly events in your area.

This hub of information and resources needs to be in your Bookmarks, as it’s one of the most comprehensive and information-rich sites available on autism. Autism Speaks is an organization that’s dedicated to helping everyday people, parents, educators, and more, better understand autism and eliminate the stigma surrounding the condition.

4. AutismNOW

Autism Now is another awesome online resource for all things related to ASD. With a focus on early detection, early intervention, transitioning, community involvement, and more, Autism Now aims to cover the entire spectrum of obstacles and challenges that come with being a parent of an autistic child.

You can find fact sheets, information on programs, treatment, and providers, an online support community, and more at https://www.autismspeaks.org/. The organization also operates an autism call center in case you have any questions about your child’s condition and how to handle certain obstacles that accompany it.

You can also sign up for one of Autism Now’s webinars on the subject of ASD and navigating its obstacles. You can never learn too much about your child’s condition, after all.

5. TACA

TACA, or The Autism Community In Action, is an organization dedicated to providing support, education, and hope to families living with autism (according to the organization’s own mission statement). With a powerful set of core values and an online community that’s home to thousands of parents, caregivers, and educators, TACA is a must-have resource for families with autistic children.

From online programs and webinars to mentor programs, scholarships, outreach, and more, TACA covers pretty much any obstacles you might encounter during your journey. You don’t have to do it alone; TACA is here to help. Visit https://tacanow.org/ today and take advantage of the site’s many resources.

Conclusion

Luckily for us, the web is home to thousands of resources for parents of autistic children, their caregivers, and educators. The more information we can get out there about ASD and treatment, support, and caregiving options, the more we’ll understand autism and how to navigate it as parents. Don’t wait! Check out one of these five resources today. 
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Parenting Kids with Both ADD and ASD

"My son was originally diagnosed with ADD (age 4), but now they say he has 'high functioning' autism and ADD (age 6). What is the main difference between these two conditions, and is it possible to have both?"

Most kids don’t receive a diagnosis of ASD level 1, or High-Functioning Autism (HFA), until after age 5 or 6 (around the time they start public school). Usually, they are diagnosed with Attention Deficit Disorder as preschoolers. Part of the reason for this is that pediatricians routinely screen kids for ADD – but not for autism.

Another reason is that an HFA kid's social impairment becomes more evident once he or she starts school. Finally, pediatricians are reluctant to label a youngster as "autistic." It is okay - and even a badge of honor - to have a “hyperactive” youngster, but it is another thing entirely to have an “autistic” youngster.

Pediatricians make their diagnoses based on the kid's behaviors. Since kids with ADD and HFA share similar behaviors, the two can appear to overlap. However, there is a fundamental difference between these two disorders. HFA kids lack what pediatricians call "social reciprocity" or Theory of Mind. Theory of Mind is "the capacity to understand that other people have thoughts, feelings, motivations and desires that are different from our own."
Kids with ADD have a Theory of Mind and understand other people's motives and expectations. They also make appropriate eye contact and understand social cues, body language and hidden agendas in social interactions. HFA kids don’t!

Kids with ADD respond to behavioral modification. With HFA, the disorder is the behavior. Both kinds of kids can tantrum, talk too loud and too much, and have problems modulating their behaviors and making friends. Both are “social failures” to one degree or another – but for different reasons.

The youngster with ADD knows what to do – but forgets to do it. HFA kids don’t know what to do. They don’t understand that relationships are two-sided. If the youngster talks on and on in an un-modulated voice about his particular interest, he simply doesn’t understand that he is boring his friend and showing disinterest in his friend's side of the conversation. On the other hand, the youngster with ADD can’t control himself from dominating the conversation.

An HFA youngster can appear unfocused, forgetful and disorganized like a youngster with ADD, but there is a difference. The ADD youngster is easily distracted, whereas the HFA kid has no "filter." The child sees everything in his environment as equally important (e.g., his teacher's dangling earring is as important as what she writes on the blackboard).

The HFA child doesn’t understand that he doesn’t have to memorize the entire textbook for the next test. He doesn’t "get" such rules. Kids on the spectrum tend to get anxious and stuck about small things and can’t see the "big picture." On the other hand, kids with ADD are not detailed-oriented. The ADD youngster understands the rules – but lacks the self-control to follow them. The HFA child doesn’t understand the rules.
 
==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

The unfocused ADD youngster is "nowhere," but the highly-focused HFA “fantasy" youngster is somewhere else. "Fantasy kids" retreat into a world of their own making, a world where everything goes the way they want it to. They play video games for hours or retreat into books and music. Their daydreaming and fantasizing resembles the behaviors of non-hyperactive kids with ADD.

Obsessive-compulsive kids with autism live a world they create from rules and rituals. Like ADD kids, they appear preoccupied and distracted – but for different reasons. They appear distracted because they are always thinking about their "rules" (e.g., Did I tie my shoelaces right? Did I brush my teeth for 3 minutes?).

Some researchers estimate that 60% to 70% of HFA kids also have ADD, which is considered a common comorbidity of HFA. Other researchers say that the two disorders can’t exist together. Still others insist pediatricians have it all wrong - and that the two disorders are the same. The real problem is that there is no hard science. No one knows exactly how slight imperfections in brain structure and chemistry cause such problems.

For this reason, getting the right diagnosis for a youngster who exhibits behavior problems may take years of trial and error. Diagnosis is based on observation of behaviors that are similar for a myriad of disorders. The tragedy is that the youngster often doesn’t receive the correct medications, educational strategies, and behavioral modification techniques that could help him function on a higher level. He falls farther behind his peer group and loses ground when he could be getting appropriate treatments.

Psychiatry has made great strides in helping kids manage mental disorders, particularly moderate conditions, but the system of diagnosis is still years behind other branches of medicine. On an individual level, for many parents with children on the spectrum, the experience can be exhausting.  




 
==> Has your child been diagnosed with both ADHD and autism spectrum disorder?  Then you will want to borrow from these parenting strategies that address this combination...

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

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

•    Anonymous said... Add is part of asd. That's why so many kids are diagnosed w add before they get an actual diagnosis of high functioning or aspergers (my daughter was finally diagnosed w aspergers after about 3 years of an add diagnosis)
•    Anonymous said... ADD/ADHD and ASD are not the same. They are each mutually exclusive disorders, yet they can also be comorbid. I have two with ASD, yet neither of them have ADD/ADHD.
•    Anonymous said... I fought for my son to not have the ADD label because when I saw the test a lot of the questions they asked where his asd. My paediatrician said I had to take out the asd and answer the questions but it is not that black and white. I agree with Michelle if they can sit and concentrate they are not ADD.
•    Anonymous said... I personally believe that ADD/ADHD has been overdiagnosed for many years and now it seems that many PCP's/Pediatricians are diagnosing Asperger's without doing any Psychological testing leading to it now being overdiagnosed as well. These are not even Developmental Pediatricians who do not have the credentials and training to diagnose ASD.
•    Anonymous said... In kinder the school said my son was autistic. Since he was very verbal, I thought he was just ADHD. Now, I know he is aspergers and so much more of his sensory issues make sense now.
•    Anonymous said... My 11 yr old had adhd first and now aspergers
•    Anonymous said... My 4 (almost 5) year old dr says he is hyperactive disorder but does not have the attention defecit. His preschool is suspecting aspergers but his dr doesn't want to do any testing for that until after we start medicating him. He too will snap right to attention if the subject interest or benefits him.
•    Anonymous said... My son can concentrate but only to a certain point before he gets unfocused. It's hard for him. He was initially dx AHDD and later ASD with AHDD. AHDD came at age of 5 and ASD at age of 12 after multiple problems with school, bullying and behaviors which interfered with his school and life. He still takes meds for concentration and mood stabilizers for some of the mood swings. I have to say it has been a challenging road. But once you figure out what to do for them it gets a little easier. My son is now 17 and soon graduating high school. In some parts he acts his age and in others he acts like he is 12. I try to focus his attention on becoming an adult and college, but he needs a lot of hand holding. I do believe the two disorders exists amongst themselves. He is no longer hyper but surely very forgetful and unorganized.
•    Anonymous said... My son has a duel diagnosis of ADHD and Aspergers.
•    Anonymous said... My son has Asperger's and ADD diagnoses but I don't agree with the ADD. He is definitely able to concentrate for hours if it's something he likes to do and we have tried medicines in the past for attention problems and they made little to no difference for him.
•    Anonymous said... my son has been diagnosed as adhd at about 5. around 8 years old Aspergers was noted and he was officially diagnosed as having both.
•    Anonymous said... My son the same Maria. He has adhd and aspergers.
•    Anonymous said... My son was diagnosed with high functioning Aspergers when he was 4. This year, now he is five, they said he also has ADD. I was told ADD typically always comes with AS. I don't exactly know what my opinion on that is. Yes, my son has trouble consentrating and likes to move around a lot. And that is something I work with him on. I don't know if he really needs that extra label and I do know I am not going to medicate him just to do so.....listen to your intuition. Unfortunately, you will have to do the research as the medical field is highly uninformed (IMO).
•    Anonymous said... Personally I think they over diagnose add. But the 2 are very similar. Except those with add, cannot concentrate on anything, whereas those with Aspergers can concentrate on something they are interested in.
•    Anonymous said... Since our children are around the same age, mine will be six soon, and they have the same diagnosis, feel free to message me and we can talk more.
•    Anonymous said... The two are very different, very very different. The best person to ask is someone who specializes in this. Your child's doctor or specialist will be able to explain to you what the differences are in relation to your child. All aspergers/autism is different so it's impossible to guess what your child is like in that respect. It's possible to have both and my son has many friends who have both. ADD doesn't usually have social issues, sensory issues, and so many other typical ASD issues.
•    Anonymous said... Without sounding like I'm accusing anyone, because I'm not, I think many ASD kids get misdiagnosed with ADD because they are so hard to discipline that they can sometimes just be wild little things. ASD kids don't pay social penalties for anything so they lack a lot of self discipline that NT people learn very early. And traditional discipline doesn't always work. I know if I send my son to the corner he just makes up stories and reads them to the floor and he loves doing that.
•    Anonymous said… My son was diagnosed with ADHD at 7. Typical ADHD meds only made his problems worse, and it wasn't until I saw a checklist of Asperger traits that it clicked "that is him!" Now, at 10, he finally has an "accurate" diagnosis. Beth Ann, I understand where you're coming from. My son is very high functioning and can appear neurotypical in many settings. He even fools me sometimes, until something happens to remind me that no, I'm not dealing with a "typical" child here. That is THE hardest thing for me as his mom.
•    Anonymous said… My oldest wasn't dx'd till 3rd grade but he also has add. We just thought he was immature and a little eccentric as an only child. He hit all the normal milestones. We realized it was something more but bounced a lot of letters around. After some research by his psych and us we all agreed on aspergers. But what do I do with a kid who appears neurotypical and not the full blown vs of autism?
•    Anonymous said… After it took myself, 2 nurses and the doctor to pin my 3 year old son down for a strep test and him coming up with a bloody mouth would she finally have a consultation with me about aspergers. He has major sensory issues. at his last dental cleaning it took 5 of us to hold him down. after his diagnosis, he is in pt, ot and speech. it has only been a month but am starting to see a little improvement.

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Managing “Fixations” in Children and Teens on the Autism Spectrum

"How much should we allow our daughter [high functioning] to play video games? She would spend most of her time doing this if we let her. My husband and I are divided on this issue, which has caused a riff between us."

If you are the mom or dad of a youngster with ASD level 1 [High-Functioning Autism], you may have heard your youngster exclaim, "But I can't live without it!" on more than one occasion. You may also notice that the book bag you just saw him pack is suddenly filled with a few more Harry Potter books. Or perhaps that suitcase for the trip to grandma's house has a Gameboy in it, when he promised he would leave it at home this time.

Fixations or perseverations with certain topics or objects, ranging from books, video games, or trains to history, movies, or any number of other subjects, are a classic symptom of ASD. In addition to impairments in social functioning, the Diagnostic and Statistical Manual lists as a characteristic of the disorder restricted, repetitive, and stereotyped patterns of behavior, interests, and activities, as manifested by at least one of the following:
  • apparently inflexible adherence to specific, nonfunctional routines or rituals
  • encompassing preoccupation with one or more stereotyped and restricted patterns of interest that is abnormal either in intensity or focus
  • persistent preoccupation with parts of objects
  • stereotyped and repetitive motor mannerisms (e.g., hand or finger flapping or twisting, or complex whole-body movements)

What's the harm? Well... while these fixations must be understood and accepted as part of the disorder, they are also coping mechanisms that kids with ASD use to escape social anxiety. For example, video games are a very common interest among children with the disorder. Although the virtual world and these games can be a great place for kids to practice social skills, make friends, and have fun, the interest in video games can quickly become an unhealthy and even dangerous obsession.

For kids who get bullied all day at school or feel ostracized and out of place in their everyday lives, it's soothing to come home and play video games for hours. In the safe haven of online gaming, children on the spectrum can isolate themselves from real-life people and the complexities of face-to-face interactions. However, the social setting in online gaming or chat rooms is unrealistic and far more predictable than real-life social situations. While social conversations in real life are highly complex and unpredictable, online gamers share a common and simple language for communicating.

==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

Since most online interaction occurs through typing, there is time to think about a response, and the response can be given in symbols and phrases without regard for facial expressions or nonverbal cues. In addition, curse words, rude remarks, and hurtful jokes may be considered socially acceptable online, but they will not be welcome responses in the real world. This disjunction between socially acceptable interactions in the virtual world and the real world can be terribly confusing to kids with High-Functioning Autism who already struggle to understand basic social conventions.

Moms and dads of a youngster on the autism spectrum are thus faced with a dilemma: Do we limit our youngster's time spent doing the activities that interest her most and run the risk that she will withdraw even more, or do we allow her unfettered access to things like video games and science fiction/fantasy books and movies despite the obvious social repercussions?

According to many experts, it's important for moms and dads to find the balance between accepting their youngster's unique interests, and encouraging their youngster to develop social skills and additional interests that might take him outside of his comfort zone. By granting unlimited access to video games and other fixations, moms and dads offer their kids nothing more than a quick fix.

The perseveration may be a convenient coping skill for facing the hardship of a long, difficult day at school, but it will not be the healthiest path into adulthood. Kids with Autism need to be challenged to explore other interests and find healthier coping skills. It's easy to use video games and other antisocial outlets to cope, but easier isn't usually better.

If young people with ASD aren't encouraged and helped to develop social skills and independent living skills, there will be a direct impact on how many friends they have, and how successful they are in school and on the job later in life. They may be soothed in the short term, but that deep underlying desire to make friends will remain a source of constant dissatisfaction and further isolation.

Addressing fixations is difficult for moms and dads. On one hand, video games and other interests encourage more social interaction than kids with ASD would ordinarily have. On the other hand, it's NOT the kind of social interaction that prepares them for life. Moms and dads should encourage their youngster to develop interpersonal skills “off” of the computer, and set limits around how often the child uses or talks about his or her fixations.

Moms and dads should offer incentives to their youngster to balance his or her time spent focused on the fixation and time spent doing social activities. For example, if a youngster is passionate about video games, the mother could agree to allow the youngster a certain amount of time to play each week in exchange for the youngster's participation in an after-school activity.

Parents need to learn how to negotiate their youngster's fixations and find the appropriate balance. For example, if a youngster wants to take the entire series of Harry Potter books on an experiential learning trip, parents can explain that the books are too heavy and the youngster will be permitted to choose only one favorite book.

In this way, the parent acknowledges how important the particular interest is to the youngster and offers him a choice in the process, while setting clear and fair limits and ensuring the child will still get the social interaction he needs out of the program. Similarly, if a youngster insists on taking his portable video game or DVD player to summer camp, moms and dads can reach a compromise (e.g., “You can take it and use it on your way to the campsite, but when you arrive, the camp director will hold onto it for you).




When children with Aspergers and High-Functioning Autism have a clear structure around when they can engage in their particular interest, they are more willing to accept rules limiting its use. At some of the schools that specialize in “special needs” students, the kids are allowed to read their favorite book at designated times, but they are not permitted to bring the book to meals. In this way, the children learn that their interests are perfectly acceptable when explored in socially appropriate ways, places, and times.

The fixations and perseverations of kids on the autism spectrum fulfill a need in their lives that will likely never disappear completely. However, their usefulness in real life is extremely limited. Everyone needs an occasional break from the rigors of daily life, but kids with the disorder depend on their mother and father to set limits around these fixations and offer guidance in navigating the complex social world around them. By making a plan and following through with it, you accept your youngster for the unique being he or she is, while providing the child with the tools needed to live up to his or her full potential.

==> Need more tips on how to handle your child's fixations and obsessions? You'll find more than you'll need right here...


 
COMMENTS:

•    Anonymous said... Funny because I had this conversation with my 8 year old son's psychologist recently. He said as a clinician he knows his answer should be "yes" to limit the video games, but he also said that because my son doesn't just play video games, he researches videos about how to defeat levels and finds parody videos about video games (also his biggest game he loves is Minecraft) that the game he plays most and all his research are somewhat educational. He pointed out that if it wasn't that, it would most likely be something else. We do take time away for the rest of a day if he is acting up horribly or not getting schoolwork done. If we don't have anything going on, we let him play. If there are things, he is limited and given several warnings in advance so he can prepare himself to change gears and not have a meltdown over it.
•    Anonymous said... Garek loves Midievil 2......but since he is way ahead in his schoolwork, pulling down As and Bs, and researching .....ok....obsessing about world history......meh.....not a concern
•    Anonymous said... It causes a big riff between the two of us too....but I would limit her playing time for an hour or take the game away for an hour or so if she shows anger, frustration or just being aggressive to it.
•    Anonymous said... My AS son is 13 and gets roughly one hour of video game time each day during the week, right after school. This gives him a break between school and homework which he desperately needs. During the weekend, he may get more time, depending on what's going on in general. My son has a few really good friends in our neighborhood and he loves to be outdoors so as the weather gets better, he spends more and more time outside, which is great. Hope you guys can find a happy medium.
•    Anonymous said... My son loves history as well. Especially about the different wars. We limit video games a lot in our house. If we don't they become an obsession. He has chores around the house that earn his game times.
•    Anonymous said... My son plays video games more than he should. However, living in a small place with no known kids his age in the neighborhood it makes it hard to do much else. Our son does do some reading as well as schoolwork so we feel that some time is ok.
•    Anonymous said... we have same problem
•    Anonymous said... I agree once my lil guy is off the darn thing he becomes so creative and interested in other things
•    Anonymous said... I don't always agree with the 2 hour a day rule when it comes to Aspie kids. It also can help them with social issues, and helps them in reacting to challenging situations without melting down. My son does get more then the generic two hour a day rule suggested by All doctors. That two hours isn't just video game time, they also mean screen time period.
•    Anonymous said... We allow 1.5 hours per day using a timer. Breaks in between. The visual red yellow green light timer from Amazon is what works best for us. We enforce it religiously.
•    Anonymous said... We are in the same boat. During the summer ours plays a lot more but we have him In activities like springboard diving whi h he loves. I use the tablet to help enforce rules. We take computer and tablet time away when he acts out.
•    Anonymous said... We have set a two hour time period where our lad is allowed to play. It turns off when the time is up. He likes having a specific time and often finds himself having so much fun doing other things that he doesn't bother anymore.
•    Anonymous said... We saw a specialist yesterday with our 8 year old. She said to limit to no more than 2 hours a day.
•    Anonymous said... We use an egg timer......and take one, two, three hour breaks.......not while eating, finish priorities first, etc

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