What mom or dad doesn't watch their "tween" become a teenager without a twinge of anxiety? Factor autism into the equation, and you may well wonder how physical and hormonal changes will affect your son or daughter.
What will it be like traversing the social minefield of high school for a young person who has a social disability? How will typical teenage rebellion look in someone who struggles with behavioral control?
“It is very frustrating not being able to change or modify the rigid behaviors that my son exhibits, for example, picky eating, rudeness to others, lack of motivation …just to name a few. Is there anything that can be done to help him be more open to change and flexibility?”
Most kids with High-Functioning Autism struggle with social skills, communication, and a limited diet, which can cause any of these issues:
behavioral problems
communication problems
desire for isolation
lack of incentive
sensory issues
social problems
dropping into a state of depression, thus making the original problems that much worse
Social skills and living skills therapy may be the most popular areas of concentration when treating kids and teens (and even adults) with High-Functioning Autism. These therapies are widely available and do bring about effective progress in most cases.
Providing incentive is the key to improving your youngster’s circumstances. Actually, incentive is a factor anytime you are seeking to modify anyone’s unwanted behaviors. Incentive in itself is definitely an old concept, but using incentive in a new way will create the wanted result for your “special needs” son.
Old Incentive—
As moms and dads, we often use “set motivators” to achieve the behavior we feel is appropriate. The concentration has been placed on the behavior, which sets a negative tone to the process of change. You can’t blame a youngster for reacting negatively to a negative tone.
Punishment: “If you don’t do ______, then you will get ______!” We have all used this at one time or another, and over the course of time, it has proven to be an ineffective motivator.
Rewards or bribery: “If you do ______ today, I’ll buy you a ______.” We’re guilty of this one too. This probably creates more confusion and greed than incentive over time.
Motivators should be positive. It feels good to see your youngster happily learning or cooperating in desired behaviors. Motivators that appeal to the individual boy or girl should be used for maximum results. Incentive is definitely personal. What motivates one youngster will not work for every youngster.
Positive reinforcement: Positive reinforcement is “catching” a child doing something you want them to do and rewarding it. The youngster gets attention and reward as positive reinforcement for doing the right thing and will focus on repeating that behavior. Positive reinforcement works because it gives kids positive goals to work towards instead of only focusing on negative consequences to avoid. Positive reinforcement fulfills strong basic psychological needs of every boy and girl, as well as setting a more positive and healthy tone for the parent-child relationship.
Routines: Keeping your youngster’s routines constant will improve his outlook. He’ll know what to expect at any given time, lessening the stress he feels.
Special Interests: Using your youngster’s special interests both at home and at school can generate positive responses in all situations. For example, your youngster’s love of trains can be used to encourage eating at home. Train themed dinnerware or even themed foods may be used to entice the reluctant eater.
By practicing positive reinforcement, establishing solid and consistent routines, and identifying special interests, you should be able to implement a social skills and living skills “parenting-plan” that will get the results that so desperately desire.
Anonymous said... Another thing to keep in mind is patience Rome was not built in a day : ) . It might take 21 days to eat that piece of brocoli or 2 years to master those social skills. Hang on to the picture in your mind of the finish line not the starting spot : )
Anonymous said... My 9 year old son has just been diagnosed with Aspergers is diet associated with it? That would explain why its so hard to get him to eat what is good for him
Anonymous said... I think it's the food texture or something that they seem to only prefer certain foods, which in my case, it's not very much. The older he gets though the more he tries and actually likes. He is 12.
Anonymous said... My son, who is 10, just tried a hamburger for the first time a few weeks ago. He had three bites before he decided he was done. I was so thrilled. It was such a major accomplishment for him! I know he probably wont touch another one for a very long time. But thats ok because he tried something new!!! Just keep showing him all of the good things you enjoy and he will decide when he is ready to try it.
Anonymous said... Couldn't agree anymore. I also literally "laughed out loud" when you said how thrilled you got, one of those "been there done that!!" I love those moments!!! :)
Anonymous said... I wanted to do the happy dance!! Every day is a struggle with food around here. I almost whooped out loud when he ate that burger! =) Anonymous said… You will be able to work with it as they get older. Once they are old enough to understand that we all have certain norms to conform to, my son at least, has started to see the value in modifying his behavior. It's not perfect but who is! I love my son and he's found others who feel the same way along his path.
Anonymous said… Yes Bianca... very familiar. i've just read the article . very good read. and i think for us, we have to set a common strict routine he follows at both houses. i feel he needs that stability n consistency. he's a good, very intelligent kids, but unfortunately with bad habits we need to change. we have to work closely together for his sake.
Anonymous said… We deal with the exact same thing!
Anonymous said… Oh I hear you load and clear... My son is almost 15 and we deal with it every day!!!
Anonymous said… My son is going on 13. Only recently has the word Aspergers been mentioned regarding his 'issues'. All in all though, he is not an extreme case. So it's hard to actually "diagnose". But what I want to share it that all through the years of speech therapy for Apraxia, we never treated him any different than we would any other child. He had the same responsibilities, demands, chores, and punishments as his brother. The biggest difference was how we presented it to him. He needed to understand the logic of why he was being asked. And the logic behind the punishments - letting him know upfront what his punishment would be if he did not do something. This goes with behaviour of all sorts. From what I understand, these children have to be taught to think and feel like we do. "taught" is the key word here. They will not 'feel' it like we do, but they can be taught. Reinforce everything you ask them to do and follow through. It takes a lot of time, but time will reward you. I sometimes have to ask him, was that the correct way to behave, speak, act? He'll hang his head and say no... So than I ask, what was the better way. He'll answer, I'll confirm, and we'll practice it the proper way. I hope this little bit helps.
Anonymous said… My son is 3 and a half and everything is no these day's, putting our foot down is met with a violent outburst that doesn't stop until something distracts him if we get angry it only makes him worse. He is still young and our first so we're still getting to grips with parenting let alone parenting an aspergers child but sometimes (we'll most times) he's hitting, kicking us we don't know what to do, he won't stop and will chase us down if we try to get away, will not stay in his room, couldn't care less about taking things away he just keeps going and we're at a total loss on how to deal with it.
Anonymous said… I knew we were making progress using the Masgutova Method when once I had to change what we were doing and he let out a huge sigh, thought about it and then said ok.
Anonymous said… i feel very much the same way. I too have more than 1 under the same roof. Definitely 3 maybe 4. My 10 yr old sounds very much like your daughter with the mood swings and the foul mouth. She too used to be so quiet and easy going ( maybe that was a sign) but she's undergoing many tests at the moment because she has many difficulties dealing with everyday routines and socially. My question is; how do we manage a home with so many different needs. How do we make sure all their needs are being met and nobody is left behind. I feel like I'm not doing a good job at this anymore!
Anonymous said… Familiar?
Anonymous said… hmm sounds like my 15 yr daughter not flexible at all, very rude to others, picking eating seems to eat the same thing all the time, lack of motivation. I have a 18 yr son who also has it but he actually got better with age but my daughter it has been a total nightmare. The rigid behaviors, the complusive behaviors the other morning instead of getting dress for school she emptys her dresser drawers and starts to refold each one in a certain way and piles it on her bed. But she never finish because I told her she had to stop go get dress if she has time before the bus comes she can finish but this is something she can do on the weekends or no school day. So frustrating and the she takes 3 outfits to the bathroom to get dressed and leaves them all the bathroom floor and her room was a big mess. So she thinks she is doing something good like organizing but instead she made things worst a bigger mess. Then you add bipolar into the mix you got one moody child like walking on egg shells or riding a roller coaster ride. I dread after school time as it is the worst time for her. She will walk in good mood then boom 5 min later better watch out. The mouth on her and the swearing, rude and disrespectful. She use to be this sweet little girl now you don't know who she going to be next. She is in the hate my mom and dad. She tells me I am kick the F out tells me I am dead, etc She has in home therapist and crisis worker too. If it wasn't for working out the gym I don't know how I would deal with my daily stress. 3 bipolars under one roof, daughter, son and husband. Then add both of them with PDD-nos, anxiety, adhd. I didn't think I would have to go thru this with her. I went thru this with my son for many years but as he got older he got better he was very aggressive when he was younger. Been inpatient 11 times from ages 7 to 11 half. My daughter had 2 inpatients this year never been in the hospital before that. But they seem to hold together there and would never show there behaviors there. They know how to play them and how to get out of there if they behave they can go home. These kids are not dumb they are smart in so many other ways. Anonymous said... You have to put your foot down. Yes they have certain issues but you have to make it clear that certain behavior will not be tolerated. They good things is many times they are so rule orentied that my son now all I have to do is talk sternly or give him a very stern NO. But we have been very strick with him for 2-3 years now. He is 8. Just because they have "issues" don't mean you excuse disrespect. As far as the food with my son if he doesn't way what we serve him he doesn't eat. It sounds harsh but he eats his dinner. It's not going to kill him
Anonymous said... Some things we should insist upon, but I believe it's important to pick our battles. After all many of our kids have issues with self esteem so punishing them all day long can cause even more damage. Disrespectful behavior and behavior that is self harming or harming to others of course should not be tolerated. Positive reinforcement can work wonders.
“Why does my HFA daughter adamantly refuse to eat any new foods? Her diet is severely limited and she literally becomes ill (or does a great job a faking it) if I force her to eat something not on her VERY small list of favorites.”
“Taste aversions” can occur both consciously and unconsciously. In many cases, children with Aspergers and High-Functioning Autism (HFA) may be completely unaware of the underlying reasons for their dislike of a type of food.
Taste aversions are a great example of some of the fundamental mechanics of classical conditioning. The previously neutral stimulus (e.g., green beans) is paired with an unconditioned stimulus (e.g., dislike of the color green), which leads to an unconditioned response (feeling ill). After this one-time pairing, the previously neutral stimulus (in this example, green beans) is now a conditioned stimulus that elicits a conditioned response (avoiding green beans as well as any other green colored food).
Because of their sensitivity to smell, temperature, taste and texture, kids with Aspergers and HFA are often "picky" eaters. Some even develop strong fetishes, for example:
they like to suck on pens, pencils or clothing
they only like beige-colored foods
they only like foods with creamy textures
they only like foods with a very sour or very spicy taste
Aspergers and HFA kids also sometimes have issues with developing gastric problems (e.g., acid reflux, hiccups, diarrhea, vomiting, and constipation). They are susceptible to celiac disease, which is caused by poor absorption of certain nutrients. The danger is that celiac disease damages the digestive system. These young people often suffer from Dermatitis herpetiformis, which causes skin rashes and tissue damage in the intestine. It has also been shown that gluten can aggravate behavioral symptoms in those kids who are sensitive to these foods.
It becomes a real challenge for moms and dads to make sure their “special needs” child gets proper nutrition. One trick that has worked for some parents is to change the texture of a despised food. If your youngster will not eat peas, try serving pea soup. If she refuses orange juice, try orange slices. Most therapists believe that the less you indulge food fetishes, the less entrenched they become. If a youngster creates a rule that "no foods can touch on my plate," it can easily become a lifelong rule if mom or dad fail to intervene.
One promising food therapy is the "Gluten-Free Casein-Free Diet" or GFCF diet. The theory behind it is that a youngster with Aspergers or HFA can’t digest casein (found in dairy) or gluten (found in grains). It is true that undigested molecules of these substances frequently show up in their urine samples. These amino acid chains (called peptides) affect neurological function and can worsen a youngster's symptoms. Peptides may have an opiate effect on some kids.
Parents can begin the diet by first eliminating either the casein or the gluten food group. No gluten means avoiding the following (just to name a few):
all kinds of flour
barley
biscuits
bread
cakes
cereals
croutons
donuts
food starch
oats
pasta
pie
pizza
pretzels
rye
Parents can substitute gluten-free products. Next, eliminate all dairy products (e.g., milk, cheese, goat's milk, goat cheese, ice cream, yogurt, most margarines, puddings, etc.). If parents eliminate the dairy group, they may have to give their youngster calcium supplements. They also need to cut out "trigger foods" (e.g., chocolate, food colorings, caffeine, or peanut butter).
Many mothers and fathers believe that the GFCF diet really helps their kids. In one survey of over 2000 parents who tried it, most saw significant improvement – and five reported "miracles."
Research into diet and vitamin therapy for kids with Aspergers and HFA is very sketchy at this point. Nevertheless, many parents try them. One scientific study of alternative therapies found that over half of all parents of Aspergers kids have tried diets, herbs or vitamin therapy – and 72% felt they were worthwhile. Many mothers and fathers swear by the GFCF diet. Other parents prefer the Feingold diet or megavitamin therapy.
Parents can buy supplements of herbs and vitamins specifically made for young people on the spectrum. Such supplements often include calcium, fish oil, omega -3 -6 or -9, vitamin B-6, HNI enzymes and DMG or dimethylglycine. If parents use these diets and therapies, they should keep written records of how often their youngster experiences temper tantrums or exhibits other behaviors. In this way, parents can tell if the therapy is working.
There have been a few scientific studies of the GFCF diet. In a study of 15 ASD kids (2 – 15 years of age), there was no difference between the kids who followed the diet and those who did not. However, researchers at the Loma Linda Medical Institute in California concluded that the diet was mostly helpful and improved nonverbal cognition, but that more double blind studies are needed.
Many moms and dads have tried the GFCF or Feingold diets and found that they were not worth the effort. These diets make it extremely hard to buy regular groceries or to eat in restaurants. If there are siblings involved, parents end up cooking different meals for them. Also, trying to stick to the diets may cause parental burnout, which then causes the disadvantages to outweigh the advantages.
• Anonymous said... For my kiddo, it's a sensory thing..... Mashed potatoes, peas, peanut butter etc. all have a thick, somewhat sticky texture that makes her wretch. Having that history makes her reluctant to even taste things like pudding, custard or soups with a thicker texture..... If it LOOKS like it might have the wrong texture, it's not gonna happen. • Anonymous said... Forcing is counterproductive .... Sometimes " planting the seed" and wording or demonstrating the benefits are a slower but more lasting lesson at home we have the rule of at least touching or smelling the food and if I feel there is a strong possibility he will like it, I ask that he just lick or put some on his tongue - always with the promise that a genuine dislike will be accepted that time. There are definite things he will still not and probably never eat but this approach has increased his diet greatly. • Anonymous said... Give him time, and don't force the issue if he truly dislikes something. I learned that the hard way and cleaned up alot of messes because of it. My son was the same way for most of his childhood but in the last year (he's about to turn 13) he has grown out of alot of it. He still refuses to eat certain things (bananas being at the top of the list) but he will now at least try to eat a cooked potato or carrot in very small quantities where before they would trigger immediate gag reflexes and he is also finally eating at a healthy level. • Anonymous said... Hang in there. Texture smell & taste can be overwhelming 2aspie kids. I have always introduced different food 2my daughter w/the attitude 'try 1bite, the worst that will happen is u dont like it!' • Anonymous said... How True! • Anonymous said... I have come to understand that this is the ONE thing my child feels he is in control of. If you try to change it he gets very upset. He will sometimes eat other foods, but when it comes right down to it, this is the way he wants it (same foods, limited menu), because he is in control of it. We will work on change in that area once we are comfortable with the progress we're making in other areas. One step at a time. • Anonymous said... My 5 year old is the same way. I've gotten him to try maybe 2 things since he was diagnosed a year ago. I think my son will eat maybe 5 things that is it! So I do a lot of vitamins to give him what he needs • Anonymous said... My son is the same way! I have tried to introduce new things to him, but he refuses to go out of his comfort zone of having only 10 things that he will actually eat. He always has to smell everything too. I have noticed, that he will find something he really likes, such as a plain ketchup sandwich, and eat it for weeks, then he goes to something else. I have to make him a separate meal every night, because he refuses to eat anything we are having. • Anonymous said... Same problem here. • Anonymous said... sometimes she will try it sometimes she wont. When she does like it i usually have 2remind her she liked it last time & 2try it again. I let her decide 2try it, but i keep presenting different things all the time. Slowly we have expanded her diet! Just keep encouraging her 2try! • Anonymous said... That is one battle I don't fight. • Anonymous said... The food thing is the one immovable object with my son. He does everything else I ask. If he could do it (eat more foods) I know he would as he loves to make me happy. • Anonymous said... We have been SO lucky with our son, he loves his veggies... but only raw. He really hates cooked veg. My hunch is that this is two fold. We have a garden that we let the boys just run free and munch whatever they want from there, so it gets to be "their idea". That has seemed to help the older one relate to what is on his plate a little better. Also, we tend to do food in courses. It's just easier to get the boys to sit down and plop a few bowls of cut carrots, celery, broccoli etc. and dip and let them graze on that first (again, their choice as to what they eat), then we tend to serve the meat/protein next and the starches last. • Anonymous said... We start oral ot this week, i wonder how its going to go for my 6 yod who has spd. Has anyone here done the oral ot? • Anonymous said... Why? Sensory issues, smell, texture and the way it feels in the mouth or hands, taste, the way it looks, there's a lot going on with sensory and food and why and what we eat. • Anonymous said... Wow! I'm so glad I'm not the only one! My son is 8 and JUST decided he would take 1 no thank you bite, of what we are eating as a family, but he has to try it... He smells everything, and most things he tries will instantly make him gag. He puts ranch on EVERYTHING. He does willingly try it because he knows we expect him to and its ok if he gags, just drink it down quick with water.
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.
