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When Teachers Complain About Your ASD Child's Academic Performance


"My daughter is 12 years old, high functioning autistic and now in middle school. Her teachers are constantly sending me notes saying she isn’t working up to her ability and they can’t get her to stay on task or ask for help. When she’s home, I can get her to do well with homework. I obviously can’t go to school with her everyday. What are some ways the teachers can get her to stay on task without making her stand out to the rest of the class? She is also legally blind and doesn’t want to appear different in any other way."

If your daughter’s teachers expect her to respond to the predominantly visual learning methods that are used in most schools, obviously, they will not work for her. If this situation exists, no wonder your daughter can’t stay on task or ask for help. In addition, the symptoms of High-Functioning Autism (HFA) affect her attention span and motivation.

First of all, your daughter should be evaluated by an educational child psychologist (either privately or through the school). A full diagnosis and specialized treatment is very important, including a complete assessment of her strengths and weaknesses (including her vision problem).

Often times, children with HFA are expected to be able to function successfully in mainstream education, but they struggle through no fault of their own. These "special needs" students are very smart, but their problems with social interaction and repetitive behaviors make mainstream education difficult. In addition, your daughter has a serious vision problem, an added cause of difficulties. Once evaluated, she can be appropriately placed in a mainstream educational program with instructional aide support or in special education.
 
 
Based on your description, it sounds as though the school’s program (whether it’s mainstream or special education) is not meeting her needs, and the teachers do not have the knowledge they need to help her. Special training and classes for them is vital, as they must address issues with HFA as well as her vision problem.

The school has a responsibility to re-evaluate your daughter if she is not progressing well. This is a legal, federally mandated responsibility. You should formally request the school to address your daughter’s difficulties and, with your input and that of her doctors, teachers, and psychologist, prepare a specific, educational plan to address all of her challenges. You may need an advocacy group’s help if the school is reluctant to do this.

Often times, a child with HFA and other diagnoses is more successful when placed in a special education classroom (or even a special school) with trained teachers and aides who provide a consistent, individualized educational program in a smaller group of students. Counseling and occupational therapy can be easily scheduled, monitored, and supported by special education teachers. The child may have the same teachers and aides for several years, increasing their understanding of her needs and maximizing her progress.

While your daughter may not want this type of placement at first (because she will appear to be “different”), once she experiences the improvement in her ability to participate in the curriculum, she will understand why a special placement may be the best option for her. Counseling may help her come to terms with the fact that she is different in some ways from other students, but that she is also very gifted, as well. 

 
 
 Here's what other parents have had to say about this issue:

•    Anonymous said... Her desire to appear like the other kids may be the motivator to do her best "like the other kids" to do her homework so the teacher wont single her out and get mad at her (blending) and so when the teacher calls on her she knows the answer and the teacher won't chastise her. Maybe. Does she wear any type of eyewear to help? I'm legally blind too but fortunate to be corrected with lenses - I was bribed with contacts back when I wasn't performing to my abilities and not getting my homework done
 

•    Anonymous said... i hear that! with my b we use positive reinforcements..home and at school.visuals, since the child is blind, obviously would have to cooperate this somehow, she has a few breaks throughout the day. small quick breaks earned has helped to keep her anxiety down, stress down and attention and academics up, she will pick a desirable thing, like computer, clay, paining whatever...then she starts her work, has a small chart/token collector on her desk, and as she completes her work she earns them. when she gets all, she gets to take a break and do what she worked for. somedays may need more breaks then others, but overall this has been a wonderful way and has worked for us at school for quite a few years now.
 

•    Anonymous said... IEP is the solution. Kids don't need to know and she will get all the accommodations she needs.
 

•    Anonymous said... My son is 15 and a sophmore in high school. He was diagnosed finally at the end of his 7th grade year with High functioning Aspergers. He is in AP courses an Athletic Student Trainer for the second year and wants to study sports medicine. He excels in his classes and things come naturally to him but can not for the life of him remember or care to do his homework. His average will drop to a 37% and the next week it will be a78% because he averages in his head how many homework assignments he can miss and still pass the class. How can I teach him how important this is for his future. He wants to enroll in a dual enrollment program next year to graduate with an associates degree but his Counselor says probably won't be able to due to he doesn't complete his assignments. ... what can do any suggestions. He has a504 plan already.
 

•    Anonymous said... story of my life! Does she have a 504 plan? Last year when my daughter now 11 entered Middle School we had a heck of a time. Then we received the official diagnosis and created a 504 plan with the school. It doesn't fix everything and there is still daily communication with almost every teacher, but it has helped a lot. Every afternoon she goes to skill block where an IA checks her agenda and makes sure she has all her assignments and brings home all her required homework. Then when my husband picks her up from school, he checks her agenda and makes sure the required homework books made it into her bag before they even leave the parking lot of the school. I also email regularly with her teachers to make sure she stays on task with her assignments. We work very closely with them to ensure each of us is doing everything we can to help her. For example math, at home she would do fine with math work. At school, she has a D in math and is bombing all her quizzes. We found that providing her graphing paper helps her stay organized as she is working through the math problems, and providing her a quiet place to take the quiz alleviates most of the distractions she experiences. She goes from getting a 40 to getting a 90 by those two simple changes.
 

•    Anonymous said... u need to call school get a IEP. My son is 12 has aspergers. He just started JR high. he was having similar problems. If the homework becomes too overwhelming u can get it reduced.
 

•    Anonymous said... 504 plan has to do with allergies, an IEP is for individualized education program....aka...special ed
 

•    Anonymous said... Getting an IEP is easier said than done. Think I'm gearing up for that fight soon... We are their best advocates. 

*    I am having the same concern except my son is a 15 yr old sophmore. He was diagnosed late in his 7th grade year with High functioning Aspergers. He is very gifted and school work comes naturally to him. He is a student Athletic Trainer for the second year and wants to continue his education in sports medicine. He is in AP courses but will miss homework assignments because he forgets to write it down or just simply does not want to do it. He is wanting to take dual enrollment classes next year, but his Counselor will not recommend him if he can't do the homework now. How can I get him ready?... concerned High schoolers Mommas

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Social rejection has devastating effects in many areas of functioning. Because the ASD child tends to internalize how others treat him, rejection damages self-esteem and often causes anxiety and depression. As the child feels worse about himself and becomes more anxious and depressed – he performs worse, socially and intellectually.

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Meltdowns are not a pretty sight. They are somewhat like overblown temper tantrums, but unlike tantrums, meltdowns can last anywhere from ten minutes to over an hour. When it starts, the Asperger's or HFA child is totally out-of-control. When it ends, both you and your child are totally exhausted. But... don’t breathe a sigh of relief yet. At the least provocation, for the remainder of that day -- and sometimes into the next - the meltdown can return in full force.

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Although Aspergers [high-functioning autism] is at the milder end of the autism spectrum, the challenges parents face when disciplining a teenager on the spectrum are more difficult than they would be with an average teen. Complicated by defiant behavior, the teen is at risk for even greater difficulties on multiple levels – unless the parents’ disciplinary techniques are tailored to their child's special needs.

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Your older teenager or young “adult child” isn’t sure what to do, and he is asking you for money every few days. How do you cut the purse strings and teach him to be independent? Parents of teens with ASD face many problems that other parents do not. Time is running out for teaching their adolescent how to become an independent adult. As one mother put it, "There's so little time, yet so much left to do."

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Two traits often found in kids with High-Functioning Autism are “mind-blindness” (i.e., the inability to predict the beliefs and intentions of others) and “alexithymia” (i.e., the inability to identify and interpret emotional signals in others). These two traits reduce the youngster’s ability to empathize with peers. As a result, he or she may be perceived by adults and other children as selfish, insensitive and uncaring.

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Become an expert in helping your child cope with his or her “out-of-control” emotions, inability to make and keep friends, stress, anger, thinking errors, and resistance to change.

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A child with High-Functioning Autism (HFA) can have difficulty in school because, since he fits in so well, many adults may miss the fact that he has a diagnosis. When these children display symptoms of their disorder, they may be seen as defiant or disruptive.

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Do Some Kids on the Autism Spectrum Have a Split Personality?

"Is it common for a child with an autism spectrum disorder to have a split personality (so to speak)? My daughter is a really good kid at school, but then a complete monster at home. Is this normal?"

The disorder is known to manifest itself differently with different children. Also, children on the autism spectrum may react differently to various situations depending on their individual personalities.

Your daughter may feel more comfortable with the familiar surroundings at home, and feel freer to act out more at home than in public, where she is surrounded by strangers and in a less familiar environment.

The stress of school may be relieved by a “meltdown” or other difficult behavior at home. This is a common occurrence. Quite a few kids with High-Functioning Autism (HFA) and Asperger's are saints at school, but they soak up the anguish and then squeeze it out on their family members when they get home.

HFA is treated in two ways, and both of them help manage the anxiety that accompanies this disorder. The first is cognitive psychology, and the second is prescription medication. The first thing you need to do in order to help your daughter is to find a psychiatrist or psychologist who specializes in ASDs. This specialist will be able to help you and your daughter discover the reasons behind her behavioral changes.

In addition, a specialist will help you do two things:
  1. Modify the situation or the environment in which your daughter lives in order to reduce difficult behavior.
  2. Create interventions for handling her anxiety.

Please don’t be intimidated. Changes don’t have to be complex or unmanageable. The changes you need to make might just involve changing lighting to a lower level, adjusting sound levels in your home, or creating a new schedule.

If initial interventions do not help, a psychiatrist can prescribe medications which will provide your daughter with the help she needs. It’s important to note that psychotropic (mood-altering) drugs like Zoloft or Prozac can help children, but they can also cause serious problems for children. If the psychiatrist prescribes medication, ask about dosage levels and, more importantly, side effects.

Just about all drugs have side effects, and it’s important for you to know about them so you know what to expect. You know your child better than anyone else; ask yourself if she can handle side effects like nausea, hypersensitivity, or prolonged sleepiness. These are all possible, depending on the medication prescribed.

More information about ASD children doing well at school - but poorly at home - can be found here: Behavior Problems At Home - But Not At School


COMMENTS FROM PARENTS:

Anonymous said...
My oldest son is like this. I say he assimulates (sp) at school then when he hits the door at home all bets are off and he's able to breathe. Which sadly for us means it's on and it's ugly somedays!

Anonymous said...
School is structured... maybe he can cut loose at home..

Anonymous said...
Maybe he is intimidated by bigger kids at school and he is reacting at home where everything is safe and friendly. Try and get to the bottom of his school troubles as a means to calm him down.

Anonymous said...
my daughter was like that, she had to be "normal" while at school which caused her to stress out & once she was home she was able to be herself & release the stress. In her words " Mommy, you love me no matter what even if I break something"

Anonymous said...
He's also probably over-stimulated and all the tension from being so good all day is really stressing him out so he's acting out in his safe place. My son was the same way, so we send him to school in the mornings and homeschool him in the afternoons to give him more down time. It's a good balance for us but doesn't work for everyone of course.

Anonymous said...
My son has always been this way. They work so hard to hold it all together at school by the time they get home in their 'safe haven' they melt down. I'd rather it be at home than at school or elsewhere though. However, it does wear you down after awhile. I dread 3:30pm in the afternoon on school days! Hang in there.

Anonymous said...
Im havin the same trouble as soon as he leaves school it starts but they wont diagones him cus he ok in school 4 2hrs even thow his behaviour so extreme at ome we got a surport worker health vistor social worker but im gettin no were

Anonymous said...
We have similar. Oldest has diagnosis already. Middle child we are almost certain is an aspie too. But school not interested as he is a high achiever so not having detramental effect on his school work. Has recent family suituation which ment change in routine he "kicked off " worse than the oldest. Going again to gp as want referal for him. Hope they listen this time.

Anonymous said...
Its drivin me mad my son is a very high achiever 4 a 3 year old so im not gettin much luck i havnt been to gp iv gone threw health visitor do u think i sud go to gp wud i get any further?

Anonymous said...
My son as passive aspergers he's really good in school when he gets home meltdown the problem when they r good at school aspergers never picked up by the teachers my sons wasn't it was a very good freind who noticed my sons traits

Anonymous said...
ask ur gp for a common assessment framework also a ref to camhs

Anonymous said...
have u read tony attwood aspergers my consultant told me to read it

Anonymous said...
i really feel 4 u. my son is now 8 but was only diagnosed a yr ago. took me yrs of fighting, lots of exclusions from school, evn on a half day programme. they blamed my parenting!! we had all the services wiv no help 2. he used 2 c an...See More

Anonymous said...
ask the school to ref ur son to autisum team they need to know how he is at home he may be passive like my son the school never picked it up now he's 11 he's showing all the signs the signs in adam can't mix has to have rotine noise has an imaginary freind

Anonymous said...
they can't be bothered go to ur dr ask to be ref to aut consultant keep a diary over the next few months

Anonymous said...
Thank u so much 4 ur help im in a hole an cant seem to get out il get to gp monday thank u its so frustratin 4 me i need help

Anonymous said...
Iv kept a diary over 2 months they sent me on parentin courses which did not help at all they tell things to do wid him but makin is behaviour worse an he cant cope wid it bless

Anonymous said...
Thats exactly wot i had 2 do, i was fightin the system 4 4yrs, evn believd it was my 'parenting' at 1 point but my son is now in yr 3 at school n this has been his 1st full yr being full time in mainstream wivout a single exclusion!! its not jus about the diagnosis n puttin a label on your child but gettin them and u the help an support that u so need an deserve!! shudnt hav 2 b a fight :-( xx

Anonymous said...
No it sudnt b a fight im fed up of tryin to prove it as if i wantd this 4 my son i just want him to b happy an settled

Anonymous said...
Thats wot any good parent wants 4 their child n u wil get their in the end, i did and it was worth it. just dont giv in and keep going. if u need sum1 2 talk 2 then feel free 2 add me as a friend on fb, know how tough it is n 2 hav a friendly ear who knows wot u r goin thru makes al the diffrnce :-) xx

Anonymous said...
Maybe at school there's a routine, predictability & structure and maybe there's less of that at home? It was like that for us, but once we established routines for at home and stuck to them, he was better. Stay positive and good luck!

Anonymous said...
My son is 7, and for the whole of his short life I have had a huge gut feeling telling me my son is not like his siblings or other kids. I've known in my heart he has something different. He is great at school but look out at the end of the day, worst is if there was a issue. I'm now on the road to getting answers for him as he knows he is different too :-( it is hard work and I will keep fighting for him as I'm his voice. Just hard when he is not tricking all the boxes when he has assessments and is ok at school.

Anonymous said...
My grandson who is 9 is the opposite. He acts up at school and isn't to bad at home. Structure is the key, I have found. It's a never ending battle. Now that school is out, he is acting up at home again.

Anonymous said...
My son is 11 and i have only just found out that he has Aspergers, i have always known he was a bit different and have been struggling with his bad moods and difficultness at home. I also hate it how some family members think it is your parenting that causes it! It breaks my heart, as all you want is for them to be happy and settled. I am glad i found this site.

Anonymous said...
I think a lot of times our kids work so hard to hold it all together when they are out and about, and then let loose at home where they feel more safe. All the anxiety and frustration tends to get bottled up and then let out again at home.

Anonymous said...
yes. very normal. 




Most recent comments:

•    Anonymous said… article is good but this is not split personality which is a completely different diagnosis. this describes the results/effects of their situational environment
•    Anonymous said… Aspies can hold it together the whole day but then we're exhausted and need to let loose when we get home.
•    Anonymous said… Deal with this everyday , I truly think bc she tries to hold it together at school then when she comes home she relaxes in her comfort zone .
•    Anonymous said… Does anyone have a child like this who still get services in school? I really believe in OT break during the day would alleviate alot of the meltdowns we are having immediately after school and all night - but since she is doing well there they don't really want to do anything.
•    Anonymous said… Google Pathological Demand Avoidance.
•    Anonymous said… Hell ye i relate an i cant get a diagnosise cus of this so frustrating
•    Anonymous said… I am so glad I am not the only one with this problem. My son is the perfect angel at school apparently and he comes home and completely melts down over the smallest things. I too have a hard time getting his teacher to take me seriously when he acts so well behavior wise in school and academically he's ahead of his class. Only thing we get is a little bit of OT and even thats not much.
•    Anonymous said… I have the same issue with my daughter. It is not split personality. It is the fact that she comes home to decompress. She has to release the pent up frustrations of the day. We, her family, are the lucky ones that get to deal with her decompression. I am so glad that my friend Alex pointed this out to me. It made such huge sense when he did.
•    Anonymous said… I know my son does not have a split personality but this is exactly what we go through.
•    Anonymous said… I think most of us Aspie mothers go through the same thing
•    Anonymous said… I'm grateful to have her behave at school, actually. I've also tried to think of her after school meltdowns as a compliment that she's comfortable. Sounds crazy, but it's kept me from coming unhinged on several occasions. I also try to have some sort of snack or drink ready for when she gets in the car. We go home and decompress for a little while, may watch a few of HER shows. Seems to work MOST of the time.
•    Anonymous said… It's actually normal, my son has learnt that school is important and he puts so much energy and focus into school that as soon as he walks out of the classroom its on like donkey kong, I accept most of the behaviour and dont put too much pressure on him to behave at home after school he's exhausted, but I find he is better on weekends. He will eventually find a happy medium
•    Anonymous said… It's not a split personality. They just use up every speck of self-control, self-soothing, and focus at school so have none left once they get home. We dealt with this for 2 years when my aspie was in public school - since homeschooling it is no longer an issue.
•    Anonymous said… I've been dealing with the exact things Ginger and Amy described. It's hard to get services for a child who behaves well and doesn't have academic problems, even when it's obvious that her social skills make interacting with peers difficult. Just yesterday, we attended a meeting at which I was told her day services will probably be cut because she's not currently an academic or disapline problem, but oh, come back if things get worse. It's a catch-22 for parents b/c if the child does well in some areas, the problem areas won't be taken seriously!
•    Anonymous said… Keep in mind how hard it is for an Aspie to keep their behaviour "normal" in school. They are exhausted when they come home. My daughter has the same, and I always keep in mind how hard the poor thing is working on behaving like the others at school. Everyone has to be able to behave without filters or so much effort somewhere.
•    Anonymous said… Make the teachers aware that the anxiety spills over at home in the form of outbursts or meltdowns, chewing minty gum helps me daughter to keep it together at school. This is in her IEP ... Ask the doctor who diagnosed to write something to school about how your child is affected by her anxiety. Also try teaching deep breathing and when they get home just let them check out and decompress for an hour or two. They need and deserve this time to just do whatever they need to do in order to calm down... Read watch tv, play computer games, play with pets, maybe go outside and swing or spin. My daughter used to spin on swing while singing and sometimes yelling or shreiking. We all know water is often very calming for these kids, so maybe painting with watercolors or playing in the bath tub will help. And my daughter likes hugs so that pressure of a big hug can be calming as well. I know how you feel because my daughter used to come home everyday and just lose it. It's a long learning process. Stay strong. Special children are given to special parents.😇
•    Anonymous said… My now adult daughter, never formally diagnosed with Aspergers,  has all these –“split personality, fussy eater”. I was always facing the good student, and well-behaved child to my being the overbearing personality and neurotic mother diagnosis.
•    Anonymous said… My son behaves so well at school that the teachers and staff have a hard time understanding what we deal with at home. I'm glad he is well behaved at school, though. That does help... It's always comforting to hear that we are not alone
•    Anonymous said… No, its not a 'split personality.' It is merely a function of how hard she works at school, academically and socially, and has to 'release' in a safe place. She only has so much energy to deal...
•    Anonymous said… SO much so that the school thinks I'm NUTS for asking for an IEP!!!!
•    Anonymous said… This is exactly how my daughter is. Ugh... Sometimes I think the teachers at school think we are crazy!
•    Anonymous said… we experience this too and am grateful most of the time it's not the other way around
•    Anonymous said… We have sensory breaks in our Iep. But our schools just don't do them. The classroom can also do the sensory break. It's benefits everyone. I'm thinking of homeschooling. I'm tired of fighting for the simplest requests for my child. Makes me sad.

•    Anonymous said... I try to make sure my son has an hour to chill after school so that we can avoid meltdowns at home, seems to work for us! Good luck!!!!
•    Anonymous said... LOL. I have so been there!
•    Anonymous said... My daughter would be practically mute at school. She would be so stressed out but she never stepped out of line. By the time I saw her in the evenings, she didn't have much left. One little thing could be the catalyst for a major meltdown. I used to wonder why she saved it all for me then I realized that it was because she was in her safe place. Although we have become a lot better at navigating the mood swings, I definitely think that anti-anxiety meds will help her.
•    Anonymous said... Omg so normal! My son acted out at school because he knew they would baby him and had the teachers wrapped around his little finger. They didn't think he could do anything because of his autism. At home he talked more, did his chores, had no problem with changes and doing his homework. I found out when I would go to school and volunteer for parent of the day. I was shocked how he acted. I gave him the evil mom eye lol and he straightened up real fast and the teachers were shocked at what he could do and how he acted when I was around. If you can I suggest getting into the school from time to time and she how she reacts when she knows your around.
•    Anonymous said... That's a sign of an emotionally healthy child. She knows that you will love her no matter what, so you are her safe place to fall apart.
•    Anonymous said... Yep that's my ms10, mainstream schools don't get it even if they try, Aspies are individuals and Mob discipline and peer to peer communications are all fuzzed up, that's why my girl is 2 yrs behind and all the ADHD kids get the benefits.

•    Mark Hutten said… Think of it as split "comfort levels" rather than "split personality" ...make sense?
•    Anonymous said… As a non neurotypical adult I have learned to function and work in a busy, people filled environment. I love my job but the mental energy it takes to understand people and their complexities leaves me at the end of the day absolutely shattered and tired. As an adult I have found ways to help cope with 'wearing a mask' all day, but empathise strongly with these children because their reaction is often a response to the amount of concentration and energy it takes to muster bewildering situations and interactions with other people.
•    Anonymous said… As so many have already said, YES! This is my child too! He's 18 now and still saves all of his worst behavior for home. If he's had a stressful day, look out!!
•    Anonymous said… At home, she can let out her stress that she is forced to contain at school. Home is also often less structured as an environment.
•    Anonymous said… I feel like my kid holds it in at school, and then let's it go when he gets home.
•    Anonymous said… I know this story so well.
•    Anonymous said… I was the same. I was always getting in trouble at school and I was always good at home. I have Autism.
•    Anonymous said… I would also add....it's a blessing and a curse. People are often shocked when they find out about home behavior and have trouble believing it's possible. I am thankful that he's able to manage himself in public though.
•    Anonymous said… It's called passing. Passing as "neurotypical." At least that's what I know it as.
•    Anonymous said… It's not a split personality. It's having to expend so much energy containing there little selves all day long so they don't get into trouble or get picked on for being different and then when they come home they know you'll love them no matter what so they get to unwind and blow off steam. There are techniques that we got from an OT that help get some of that steam out without bouncing off the walls or tearing up your house that are really helpful. You can also look up the wilbarger brushing technique, you have to do it consistently but it does work.
•    Anonymous said… Mine used to be like that. Then they told me it's because home is "the comfort zone" with less expectations than school. Needless to say it has turned around now and some days can be hard at home. Now they say it's because there's consistancy at home and school, and all he does is testing boundaries and looking for a reason to flip out because there's nothing to flip out about. My opinion, if he has a problem at school, something might be off. Either he's being bullied, or... there's not enough consistancy and they change a lot of things all the time, or he can't handle the pressure. You might want to take a Closer look. Those were the big problems my son had at school. Good luck xxx
•    Anonymous said… My daughter is the same. So much so.. that the school disagrees that she has aspergers x
•    Anonymous said… My kid is opposite....difficult and school and not as difficult at home.
•    Anonymous said… My son has Adhd and he is the same way.
•    Anonymous said… My son is completely like this. We're at the screening stage with CAMHS and as he's so different at school compared to home they're saying he can't have anything so can't refer him onto a paediatrician or psychologist. I'll not be letting it lie though!
•    Anonymous said… My son is the same... his teachers are flabbergasted to find out how hard things are at home.
•    Anonymous said… Poor kid is trying so hard to be "neurotypical" all day that a meltdown at home is the way they release everything they've been holding in. Sometimes immediately handing them a weighted blanket and other comfort objects the second they get home can help. Or, my son used to burn some of it off lifting weights so a physical activity might help.
•    Anonymous said… Psychologist told me he's putting on a front basically all day in school and is completely drained when he gets home so can act out or just cut himself off on his own for the evening, that's why school thinks there's nothing wrong he's gone under the radar for years because he dosent cause any trouble and his grades are OK
•    Anonymous said… Totally relate to this. Now, with a couple years of regular and ABA therapy it slowly can get better. Just today, my 13 year old apologized for screaming at me about cookies. After my initial shock, I thanked her for apologizing and told her I loved her and was proud of her for realizing and being brave enough to admit her mistake. It was a GIANT leap of progress for her. Hang in there ASD parents!
•    Anonymous said… Totally! My daughter's teacher says she can't see anything wrong with her, yet her play therapy worker at school can see her issues. X
•    Anonymous said… We had our son assessed a year ago by Cornwall ASDAT they said as he didn't tick all the 'criteria' he would receive no diagnosis. We have been struggling with at times severe behaviour for years. We waited 4 years for an assessment!!! Now have had to fight to get on Camhs list (over a year long). I am thinking of making a formal complaint. Someone told me to look into Pals... A liason service for the NHS.. Maybe of use to you?
•    Anonymous said… What others have said. Because they have used so much energy in trying to function in a school environment. When they get home, where they are comfortable, that release all that built up tension! My Mr 7, is extremely disregulated after school most days, it is exhausting!!!!!
•    Anonymous said… Yes my daughter has no problems at school but different child when she comes home
•    Anonymous said… Yes this is normal, we used to call it " Brace! Brace! Brace! For impact!" as the front door opened, he's 19 now he's not in school or employment but we are getting there. Good luck xx
•    Anonymous said… Yes! It's like Jeckle and Hyde! They fake it all day and when they get home they're in a safe place, so they explode as all the anxiety and sensory overload comes out.


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Helping Your Teen on the Spectrum to Prepare for Adulthood

"I have a 17 year old with autism (high functioning). She was a late diagnosis (wasn’t diagnosed until age 15). How do you help a teen with transition services (e.g., getting a job, learning to drive, going to college, etc.) when she doesn’t have any desire to learn or do any of those things?"

Unfortunately, the diagnoses of High-Functioning Autism (HFA) and Asperger's does not receive the same government support as do other more well-known disabilities. When financial assistance is not available for therapy or medication, disorders go untreated, and the teenager with HFA experiences emotional and social difficulties. 

If you can afford medical services, obtain them as soon as you can. If you cannot afford such services, check with your daughter’s school. They can design an individualized treatment plan (IEP) for her. 

 The ideal treatment plan involves your daughter, a therapist, her teachers, and her parents. While you may not be able to afford therapy for your daughter, you will learn a lot of coping principles at the treatment plan meetings.

A quick, easy way for you to start helping your daughter is to begin reading books and e-books about the disorder. There are many titles on the subject. Start by going on the internet and typing the words “girls with high functioning autism” or “autistic teens.” These resources can be purchased on the Internet, or you can make note of the titles and take them to your local bookstore. They will order them for you. 
 

In addition to the Internet, keep up with the information provided on this website. Make it a habit to read the questions and answers on this website to get the information you need. 

Another source of information is your nearest Autism or Asperger’s Association and support group. They will refer you to free or low cost services available in your area.

All parents of children on the autism spectrum worry about their child’s diagnosis as well as their future. There is an excellent video available titled “Asperger’s Syndrome: Transition to College and Work” by Dan and Julie Coulter.

At the age of 17, your daughter is coping with adolescence in addition to her diagnosis. Talk with her about the future, and discuss the benefits of driving, going to work, and attending college. Don’t expect her to make conclusive decisions about these subjects - especially college.

Prioritize her issues. First, make sure she gets treatment for her disorder. See if there is a teen support group in your area, and take the rest slowly. Her first goal should be learning about - and getting treatment for - her symptoms.

One educational option for your daughter is a junior college as opposed to a university. Colleges are now accommodating their growing populations of disabled students who begin their studies with a variety of diagnoses. 

 Community college can be an excellent choice for a "special needs" student, because students at community colleges get more counseling support, and since most community college students are still living at home, they have fewer new adjustments to make. 

Whether she chooses a community or four year college, it is best to find one that offers special programs for students with disabilities. Before enrolling, students with an autism spectrum disorder need help planning a manageable course load.

One way to help prepare your daughter for adulthood is a part-time job while in high school. See if you can determine your daughter’s vocational strengths and interests that will help her be successful with part-time employment. 

She most certainly has a special interest or hobby. See if there's a part-time employment opportunity that ties into her favorite activity. Across the country, employment opportunities are quite high currently, with a lot of businesses unable to find enough workers to fill the openings. Use this to your favor.


 


Parents' Comments:
  • Ageless student said...My 16 year old daughter is also a high functioning Asperger teen. Her therapist and I have agreed for some time now, however others refuse to accept it, including my daughter. She is intellectually very smart, but has no motivation and no idea what she wants to do in the future, although she says she wants to go to college. She is extremely smart intellectually, but has difficulty with keeping her grades up. She is afraid to drive (although does not admit it...just says she doesn't want too), refuses to consider getting a job. I believe much of it is due to immaturity and difficulty with any type of transition. We have provided her with every type of service available to us, to no avail. She has been in therapy for many years now and just recently we have seen a very slight (baby step) improvement. Even that small improvement shows she is moving forward and that is all I can hope for.
  • FrankieThaLuckyDog said...I have Asperger's...; have courage! I got my license from a special driver's center at 19. And, at 25 now, I still deal with immaturity with developing friendships, and I don't have a job, but am searching. I'm very talented, but no one's considering me for tha field I'm in, yet (video production/editing). So, by not bein' hired, at tha moment, I'm staying VERY active by making my own VH1-like video countdowns, of my Top 50, 100 moments/songs I like, during a particular era.
  • pooter527 said...Sounds like you are doing very well. Good luck.
 

Video Game Addiction in Teens on the Autism Spectrum

"I have a partner and many family members with an autism spectrum disorder, but the worst affected is our 19 year old son (will turn 20 next month). He has very limited social skills, isolates in his bedroom for hours on end, his eating pattern is poor, and so is his sleeping pattern. But he is addicted to a game on his computer. How do we as parents encourage him to spend less time on the computer, be a bit more social with the family, eat better, and sleep more?"

Playing electronic games provides repetition, consistency, and security in your son's life. Also, electronic games are predictable. He can count on the same actions and results every time he plays the games. 

Children and teens with High-Functioning Autism (HFA) and Asperger's want to feel safe and secure in their activities. The electronic games allow your son to follow predetermined rules that result in predictable outcomes.

It sounds like your son is concentrating on electronic games at the expense of his health. He spends time in front of a video screen that could be better spent learning new social skills, and practicing better eating habits and sleeping patterns.

Check into support groups for your son. There might be one in your local area. Support groups give advice on daily living skills and healthy lifestyles. Encourage your son to join one of these groups. He will meet young adults who are his age and may be experiencing similar difficulties with the autism spectrum disorders. In addition to information, a support group can give your son the opportunity to talk about his feelings about the disorder - and the help necessary for him to cope with adult responsibilities.
 

Another resource for your son is a therapist who can inform and teach your son social skills. A therapist or a psychiatrist might suggest Melatonin, which will help your son sleep better at night.

Your son is in his late teens, and he is fast approaching adulthood. You can use reasoning and negotiation instead of rules and orders. However, if the excessive computer use continues, you might need to move it into a room that restricts his access to it. Also, the computer can be used as a reward if your son tries new foods and establishes a regular pattern of sleep. Although your son is getting older, there are rules that are still effective in changing his behavior. You should establish those rules in your household.

As one mother of an Asperger's teen describes: "My 14-year old son is addicted to his iPad, and a forum for Dungeons and Dragons. He's doing great stuff, writing stories and everything, but we also have started limiting his time on there. It's really hard to do! We're trying the written, posted schedule thing currently. My teacher husband will be home in the evenings to help me enforce it. Sometimes I just get so tired of being the mean one, and my son has more persistence than both of us combined. But we're going to try!" 

In terms of nutrition, many kids on the autism spectrum suffer from food allergies, overgrowth of intestinal yeast, and sensitivity to sugar and dairy products. Consult a doctor to see if your son needs to adjust his diet. 

 Changing your son’s diet to wheat-free, dairy-free, and sugar-free products requires patience, because teens on the spectrum can be very strong-willed - and implementing change can be difficult for the both of you. See if other family members will adopt a diet similar to your son’s. This will make him feel integrated into the family. Also, read diet books, look into websites, and read advice from nutritionists.

Your son’s sleep patterns can be changed with consistent hours. He needs to establish a time that he will go to bed each evening and get up each morning. If he complains that he can't get to sleep or wake up at a given time, tell him that there are parts of our bodies called circadian rhythms, and they help our bodies rest. 

 If your son can get to bed at a specific time several nights in a row, the circadian rhythms in his body will reset and help him go to sleep and wake up at a given time each evening and morning. Remove all distractions from his bedroom to help him concentrate on rest and sleep.


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

Ways To Calm Children With High-Functioning Autism & Asperger's

Here are our tops 10 products that may help your "special needs" child to avoid tantrums, meltdowns and shutdowns:























Kids on the Autism Spectrum: Crisis Intervention Tips for Parents and Teachers

Crisis events and explosive behaviors from kids with ASD Level 1, or High-Functioning Autism, are among the most challenging and stressful issues faced by parents and teachers. Explosive behaviors such as property destruction, physical aggression, self-injury, meltdowns and tantrums are major barriers to effective social and educational development.

Such behaviors put these kids at risk for exclusion and isolation from social, educational, family, and community activities. In addition, explosive behaviors place a heavy burden on families, particularly as these kids grow from preschool into school age. The definition of explosive behaviors depends on whether the behaviors are considered from the perspective of an autistic youngster - or from the perspective of a parent or teacher.

From a kid’s perspective, explosive behaviors include (a) confusion about the effects and consequences of many of his behaviors, (b) engagement in restrictive and repetitive behaviors and interests that may limit the youngster’s ability to learn and to fit in with peers, (c) severe difficulty in initiating and maintaining social interactions and relationships, and (d) the inability to understand the demands of a parent or teacher and to communicate his needs and wants.
 
==> How To Prevent Meltdowns and Tantrums in Children with High-Functioning Autism

From a parent’s or teacher’s perspective, explosive behaviors include aggression against self or others, destruction of property, lack of compliance with - or disruption of - classroom routines, meltdowns and tantrums. Thus, parents and teachers need to first understand that, for the child on the autism spectrum, “coping” behaviors are often disguised as “bad” behaviors.


Here is a list of what parents and teachers should do during crisis:

1. Allow the youngster, whenever possible, to make choices as you move through the crisis intervention steps; however, do not offer choices if they would compromise what you are trying to achieve.

2. Anger, fear, and anxiety can also have an impact on behavior. Moms and dads who are going through a divorce, a health crisis, a job change, or a move might think they’re handling everything and there’s no reason for their youngster to be concerned. But if you’re stressed about something, chances are your youngster will be, too – particularly if he’s powerless to do anything about it, or even communicate his concerns.

3. Being hungry, tired, or thirsty can make your youngster cranky. Poor sleep or coming down with a cold could easily explain unusual behavior. A chronic illness or low-grade infection could make her irritable. If your youngster has a pattern of crankiness at a certain time of day, try offering a piece of fruit at that hour to see if it makes a difference.

4. During a crisis, many of your youngster’s behaviors may not make obvious sense (i.e., they don’t seem to serve any clear purpose). But, for example, your youngster doesn’t spit all over the walls and windows “on purpose” to make you angry. Assume for a minute that “crazy” behaviors like this do make some sense, and that your youngster is sending you coded messages about things that are important to him, and your job is to break the code so you can “read” the messages.

5. During crisis, always use a calm voice and demeanor, but convey firmness.

6. Give your youngster headphones so he can shut out the confusing sounds around him.

7. Help the youngster to see you as a problem solver. Let him know that you are aware of how difficult the situation is for him. Tell him your job is to help with this difficulty. Explain clearly that your help does not mean avoiding the situation or doing it for him, but rather helping him to do it (e.g., "You have a problem, and I am here to help you solve it").

8. Instead of looking at the behavior as “bad,” look for how the context or environment is out of step with your youngster, and explore what you can do about it.

9. Keep your goal in mind as you go through the crisis intervention steps, creating new rules for responding in the future.

10. Look aggressively for all possible sources of pain (e.g., teeth, reflux, gut, broken bones, cuts and splinters, infections, abscesses, sprains, bruises, etc.). Any behaviors that seem to be localized might indicate pain. If he always likes to sit curled up in a ball, for instance, or drapes his belly over the arm of the couch, that might be because his stomach is hurting.

11. Make it clear to the youngster that you are in control; don't plead or make second requests.

12. Practice/rehearse what has been decided as the appropriate solution to the problem. This may involve completing an activity, accepting a change, or restoring the environment after a meltdown.
 
==> How To Prevent Meltdowns and Tantrums in Children with High-Functioning Autism

13. Rather than telling your child what you don’t want him to do, direct him to what he should be doing instead. For example, instead of saying “stop pulling your brother’s hair,” say “put your hand down.”

14. Safety is a major priority during a crisis. Take the youngster out of the situation as soon as possible.

15. Say what you mean and mean what you say at all times during the crisis. Be very concrete and specific as you talk to your child.

16. Some behaviors, especially those that seem particularly odd, unmotivated, abrupt, or out of nowhere, may be due to seizures. If you are concerned about this, keep a very careful record of what you observe, see if your youngster’s teachers have similar observations, and discuss it with your pediatrician.

17. Some things in your youngster’s surroundings are changeable and some are not. Sometimes the problem is a well-meant gesture that’s actually counter-productive (e.g., a teacher popping a mint in your child’s mouth to keep him quiet, unintentionally rewarding him for being loud in class). Sometimes just figuring out what the problem is can help you do something about it. Your refrigerator will always make humming noises, but if you realize that sound is distracting your hearing-sensitive youngster, you can help him set up a quiet spot to do homework. Sometimes you will find a mismatch between what’s expected of your youngster and what he can actually do.

18. Record the outbursts the way an anthropologist might record the actions of a newly discovered native people. Suspend your judgments (what you think you know). Many behaviors are set-off or triggered by an event. Maybe it only happens when you turn on the fluorescent light in the kitchen. Perhaps he’s more likely to have meltdowns on chicken-and-noodles day in the school cafeteria, or after you’ve just turned on the lights because it’s getting dark outside. What time do these events most often happen? Does the same thing often happen first? Just as you might suddenly feel hungry as you walk past McDonald’s, there are “setting events” in your youngster’s life (i.e., things that “set off” difficult behaviors). You can use a diary or log to try to identify these setting events for some of your youngster’s most difficult behaviors.

19. Stay on topic during the crisis. The youngster may bring up extraneous or unrelated issues to try to justify his behavior. Ignore or interrupt irrelevant comments. Respond with: "That doesn't make sense, I can't pay attention to that," or "That is off the topic, so I will have to ignore what you are saying," or "I can't help you with your problem while you are talking about something unrelated to the current issue."

20. Try to identify any food allergies or sensitivities that might be bothering your youngster. Diarrhea within a few hours of eating a particular food could certainly indicate an allergy – so can red, flushed cheeks or ears. Many parents report that their youngster’s flapping or repetitive behaviors go away when they cut out certain foods. An elimination diet can show you for certain whether specific foods trigger pain or unusual behaviors.
 
 
Resources for parents of children and teens on the autism spectrum:
 

==> Videos for Parents of Children and Teens with ASD
 
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Picky Eating in Children on the Autism Spectrum: Tips for Parents

"Our 8-year-old boy (newly diagnosed with ASD 1) refuses to eat anything ...and I mean 'anything' ...other than chicken tenders, mac n' cheese, and watermelon. On rare occasion, he might nibble on an apple (emphasis on 'nibble'). We are at our wits end and so tired of arguing that we have simply given in to his limited food preferences just to avoid conflict. It's much easier that way. Any advice on this frustrating issue would be greatly appreciated!!!"

Because of their sensitivity to smell, temperature, taste and texture, kids with ASD level 1, or High-Functioning Autism (HFA), are often "picky" eaters. Some develop fetishes, such as only eating beige-colored foods or foods with creamy textures. They often like very sour or very spicy tastes. Some develop chewing fetishes and as a result, they constantly suck on pens, pencils or times of clothing.

These young people also sometimes have issues with developing gastric problems, such as acid reflux, hiccups, diarrhea, vomiting, or 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.

Kids on the autism spectrum frequently 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 who are sensitive to these foods.
 
It becomes a challenge for moms & dads to make sure their youngster gets proper nutrition. One trick that works for some parents is to change the texture of a despised food. For example, if your youngster will not eat peas, try serving pea soup. If she refuses orange juice, try orange slices. Most clinicians believe that the less you indulge food fetishes, the less entrenched they become. If the child creates a rule that "no foods can touch on my plate," it can easily become a lifelong rule if moms & dads do not intervene.

One promising food therapy is the "Gluten-Free Casein-Free Diet" or GFCF diet. The theory behind it is that a youngster with 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.

Moms & dads begin the diet by first eliminating either the casein or the gluten food group. No gluten means no bread, barley, rye, oats, pasta, all kinds of flour, food starch, biscuits, cereals, cakes, donuts, pie, pretzels, pizza, croutons, and even crumbs stuck in the toaster. You can substitute gluten-free products.

Next, you eliminate all dairy products including milk, cheese, goat's milk and cheese, ice cream, yogurt, most margarines, puddings, and so forth. If you eliminate the dairy group, you may have to give your youngster calcium supplements. You also need to cut out "trigger foods" including chocolate, food colorings, caffeine, and peanut butter. The GFCF Diet website offers all kinds of resources for moms & dads such as cookbooks, food products, and DVDs.

Many parents discover that the GFCF diet really helps their youngster. In an unscientific survey of over 2000 moms & dads who tried it, most saw significant improvement and 5 reported "miracles."

Research into diet and vitamin therapy for kids on the spectrum is very sketchy at this point. Nevertheless, many moms & dads try them. One scientific study of alternative therapies found that over half of all parents of kids with autism spectrum disorders have tried diets, herbs or vitamin therapy - and 72% felt they were worthwhile. Many parents swear by the GFCF diet, while others prefer the Feingold diet or megavitamin therapy.

You can buy supplements of herbs and vitamins specifically made for children with HFA. Such supplements often include calcium, fish oil, omega -3 -6 or -9, vitamin B-6, HNI enzymes and DMG or dimethylglycine. If you use these diets and therapies, the best thing to do is to keep written records of how often your youngster tantrums or exhibits other behaviors. This way you can tell if the therapy is working.

There have been a few scientific studies of the GFCF diet. In one three-month study of fifteen kids ages two to 15 years old, 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 & 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 grocery foods or to eat in restaurants. If there are other kids, you end up cooking different meals for them. Trying to keep to the diets causes parental burnout and that may not be worth their benefits.


Can a Gluten-Free Diet Really Help?

A gluten-free, casein free diet is recommended for autistic kids - and grown-ups.

Often parents feel rather overwhelmed with such a restrictive diet, and only opt to embrace it as a last resort. The results produced by the diet varies markedly - but the keyword here is RESULT. You can expect some result.

Kids with autistic spectrum disorders usually have gastrointestinal problems as well, such as reflux, constipation, diarrhea, vomiting and hiccups. It is know that the proteins found in wheat, rye, oats, barley and dairy products (gluten and casein) aren't completely broken down in kids with Autistic Spectrum Disorders. These undigested proteins can leak into the bloodstream, potentially interfering with neurological processes by having an opiate-like effect upon their systems.
 
It's suggested that these undigested proteins (peptides) can reach toxic levels, with the youngster seeming to "crave" milk and wheat products. Symptoms of gluten/casein intolerance include red cheeks and ears, dry skin, runny nose, headaches, hyperactivity, tantrums and malformed bowel movements. Does this sound familiar?

So what results can the diet produce? Parents report a variety of outcomes, including improved sleep patterns, improved speech and communication, improved focus or attention span, improved social skills, improved personal hygiene habits, improved fine motor skills, improved intestinal function, increase in affection shown, and a reduction of tantrums and irritability.

So, a gluten-free, casein-free diet is definitely worth considering for your HFA son. You don't have to feel overwhelmed by the restrictive nature of the diet. I suggest simply starting slowly and eliminating one group (either gluten or casein) at a time. Once you're comfortable without wheat or dairy products, then you can tackle the next element. If you see a desirable result from eliminating one component, you may decide not to go any further.

One mother of an autistic son who is a picky eater states:

"For our family simply substituting gluten-free flour in all recipes I used was a simple but highly effective action. I'm a home-baker, so in any cakes, biscuits, slices and desserts I just substituted gluten-free flour in my usual recipes. I didn't add any extras like Xantham gum, and didn't have any failures.

Finding an alternative to bread was our biggest obstacle. The gluten-free varieties just weren't the same, so instead we excluded bread altogether. The gluten-free pastas on the market are excellent, but do tend to cook slightly quicker.

I suggest you email all the major distributors of snack foods, such as muesli bars and fruit slices and ask for a list of their gluten-free products. This helps with easy identification at the store.

Eating out is difficult at first, but if you mention you're gluten-free most restaurant or cafe chefs will gladly prepare something gluten-free. (Of course, this rules out the fast food chains who aren't so obliging!)

For our family the diet finally eliminated all our son's known trigger foods such as peanut butter, chocolate and caffeine in sodas. We stayed on the diet strictly for 10 months before gradually reintroducing gluten. We have seen no return of the eliminated characteristics in our son . We have continued to use gluten-free pasta and flour in our cooking.

I believe that the gluten-free diet had a detoxifying effect not only on our son, but on all of us, and the benefits have been obvious. So be adventurous and try a gluten-free/casein-free diet for your Aspergers child ....you may be nicely surprised!"

 
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 FROM PARENTS:

Anonymous said...
This is so true, my son is 8 and will only eat with his hands and only processed foods n is a VERY fussy eater, he also still has a dummy, well 3 actually plus he has to have 3 rags which he cuddles constantly at home!

Anonymous said...
GOOD INFO. BUT I DEFINATELY THINK THE MORE PARENTS ROLL OVER WHEN A KID SAYS THEY DON'T LIKE SOMETHING, IT BECOMES A SLIPPERY SLOPE. AND AN UPHILL BATTLE WHEN YOU COME TO YOUR SENSES AND REALIZE THE KID IS IN CHARGE.

Anonymous said...
My 19 year old eats a specific Subway sandwich five days a week. At least he gets lettuce on it!

Anonymous said...
my sons were extremely picky before going gluten and dairy free. we did this due to food intolerances but it did work in our case. my boys now eat a better variety of food but still not as much of variety as i would like. we do alot of pureeing fruits and veges here!

Anonymous said...
I used to think the same thing, until I realized my daughter might actually starve herself because I was too hard-headed to comply with her simple requests. "Rolling over" isnt the preferred path but it keeps the kiddos content at least for a little bit. Thats what we're in it for anyways, isnt it?

Anonymous said...
my 7 year old son will only eat cereal for breakfast lunch and dinner and its starting to scare me. he will actually starve his self before he will eat anything else. he has always been tiny but his eating habits arnt helping. i have tried everything i can to get him to eat other things nothing works...i buy the gummy bear vitamins and he takes them fine thats all i can do

Anonymous said...
My son is still a picky eater, but has come a LONG way. He will eat foods from all food groups. He received ABA therapy and I remember how hard it was to get him to eat one pea (it took almost a week and two trained therapists!) To this day he still hates peas but will eat green beans like crazy! He has become more willing to try new things in the past year and that's a huge accomplishment for him. He announced last summer that he wanted to try grilled corn and brocolli and we were speechless! I hesitate to try the gluten free thing unless it is proven to be medically necessary for his condition, but I'm certainly not putting down anyone who has had success with it.

Anonymous said...
I put adam on school dinners its helped Adam he still as a thing he has to smell the food first diary products he hates have to get milk down in a milk shake

Anonymous said...
our 13 yr old aspergers son has just been diagnosed as coeliac(proven with a biopsy). He has always been sensitive to taste and texture of food usually only having one brand of the few foods he does eat. his fav foods are toast, biscuits and nuggets(all contain gluten) Does anyone have any suggestions in how we get him to at least try other foods or gluten free varieties? I know we have to get him off gluten but he has a meltdown over any new food.

Anonymous said...
My son craves carbs (breads, cereals) and sweets. We had to put him in OT when he was three because he wouldn't eat but maybe three things. He would literally gag and throw up at a pizza commercial or if I served certain foods for dinner. It is def a texture thing, but also anything the color of green he won't eat. It's very frustrating to have to make two different meals all the time (one for the family and one just for our son). OT helped with the food issue and he slowly began to increase the different types of food he would eat.

Anonymous said...
We tried the gluten-free route and did not see much of a difference, other than the outrageous cost to make gluten-free food. It was overwhelming to go grocery shopping and all that cooking only for our son to turn his nose up to the food anyway. We just try to make sure he is eating a healthy balance and encourage him to try new foods.

Anonymous said...
Really good to hear it from his point of view!

Anonymous said...
Great to listen from this perspective!! TY

Anonymous said...
Yep, this story is all too familiar to me. My son is quite a challenge to feed! And when we visit a friend or relative, I always have to advise: The best bet is to keep it plain and simple. Don't add alot of seasonings, don't smother it with any sort of sauce, don't mix foods together, don't cut such and such this way or that, I know what food battles to fight and which are completely futile. Some say if he gets hungry enough he'll eat it....but my son WILL hold out on you and you can watch him get ill doing so. He has always refused rice and all legumes except for CREAMY peanut butter. He won't eat crunchy nuts or salad or uncooked carrots. Forget pie or any other desert that has a mixture of flavors or textures. Yep, he's a plain vanilla man! I know just how to prepare what fruits, vegetables, and meats he will eat. I make sure he eats a nutritionally balanced diet on a daily basis, so at some special occasion where I'm not in charge of the food I just ease up and let him get whatever (at least there is usually some plain bread he will eat) so everybody can have a nice time. As a parent sometimes you just have to adapt and work with it just a tad. For example, my son is famous for not liking Mexican food. But I have discovered that he will eat plain chicken fajita meat ordered a la carte and some plain flour tortillas. So when we go to a Mexican restaurant that is always what he gets....and everybody is happy. The way I view it is that nobody is standing over me forcing me to eat something I can't stand, so, while I do try to encourage my son to branch out a bit, I know when to give him slack.

Anonymous said...
i don't even like my foods touching :) my son had portion rules- as he grew to 6 ft tall, he wasn't eating more to accommodate his growth spurt. it took many months to help him adjust to the proper caloric intake- he was skin and bones in the meantime.

Anonymous said...
my son has always been like this hes 14 now and getting a little better..but can totally relate

Anonymous said...
My son will only eat crunchy foods or foods that are pureed. I learned early on how to make smoothies with veggies. :) And yes I know all about him "holding out". He would rather starve and be sick then eat something with a weird texture. Sometimes at restaurants he just doesn't eat. I'm okay with that but some family members would rather give in and buy him a milkshake which is SO irritating. I turn my back for a second and he's holding an ice cream cone. Please, if you are reading this and you are a family member that under minds the mothers' wishes, PLEASE STOP you are not helping....done ranting now. :)

Anonymous said...
I love reading or hearing from other more verbal teens. My son has a hard time getting what is in his head out of his mouth - but he loves it when i find these little nuggets of asperger wisdom...It makes sense to me that he can only think of the taste of one food a time. I can't wait to ask him if that is what it is like for him, we are very sucessful at comimg up with plans once we know what his brain is saying and what his desires are saying. I might get a hug for this one! I am so thankful that everyone shares their experiences, so that other families can benefit.

Anonymous said...
My son would go rather starve too than eat foods that are mushy.

Anonymous said...
My daughter is 5 and she would rather starve than eat just about anything. She won't even drink milk-shakes or smothies. Basically she survives on pediasure!


Anonymous said...
Yes that's basically all they eat....we quit fighting it...he is ten and only eats burritos,Mac cheese and nuggets and pizza and hot dogs sometimes if they look right.he was eating Lil pepperoni pizzas and picked Pepperoni's off so we bought same ones n cheese but he won't eat them because they look nasty...we can't give him chips with his food or he won't eat the burritos or main food...nothings changed just food...if we buy somethn n a different pkg he may never eat it again.his aunt gave him Mac and cheese n a blue box and he would never eat it again lol its very frustrating and challenging.we just gave up and give him vitamins...and if u try to make a good meal like say he likes green beans,,chic nuggets,Mac cheese and biscuits and I'm so happy cuz he loves those he can only eat one of them...so Dont knock yourself out trying I've done it for years just be happy he eats the one thing....good luck

Anonymous said...
Vitamins, and a good fish oil supplement.

Anonymous said...
My son is 8 and we dont treat him any different, but then again we never did. Both our boys eat what we eat. If they dont like it then they can go hungry. Yes he complains most of the time but he eats his diner. We keep our 8 year old on a very tight leash, he knows where the boundaries are what is not exceptionable behavior. Because he is so smart many times if we show him videos and let him research why its so important to say eat healthy he gets right on board and sometimes takes it to an extreme. My don LOVES burritos and would eat them all day every day. As a parent you cant coddle them just because they have a diagnoses. When he has a melt down I know its because its because of his "issues" but he MUST learn how to cope with this and learn to not let it cripple him. Its so hard as a parent and it breaks my heart to see him struggle but I also see how he is learning to cope and grow.

Anonymous said...
My very picky eater is now almost 10. For the last few years, I have had the few healthy foods that he eats on hand all the time. Finally, we went to a doctor who said that he has to cut out white carbs and sugar. He is old enough now to understand that healthy foods make an impact on his health and on how long he will live. Sometimes waiting it out really works well.

Anonymous said...
That's all they eat, plain cheese pizza, nuggets, chips, chicken strips, no fruit or veg, it's hard but the more you push and argue the more they back into a corner. It's the only control a child has is food intake. Coke and cordial too. I feel for you xx. He will come right later on but it's going to be a very long time. Also if it doesn't look right they won't even try it or not cooked by the right person. It's really tough but just no control at all. The hardest years are between 12 - 17

Anonymous said...
I am grateful that I introduced my son to healthy food very early in his life, I always felt that something was wrong with him because of his meltdowns and obsessions when I spoke to the pediatrician she suggested that he had asperger, and she was right, right now I am learning to cope with the tantrums and the never ending questions but I am glad that may son eats healthy with lots of vegetables even though he craves for oily food and from time to time i would let him eat pizza or chicken nuggets

Anonymous said...
My son is now 12 and started out eating like all others their fruits and veggies early in life...however very quickly started showing his dislike for food if it were to chunky or over or under cooked, or not the right temperature...or brand...he only eats about 5 things no matter how I try..Janes chicken nuggets, spaghetti with red sauce no meat, pancakes with raspberries, delissio thin crust cheese pizza, and if I'm lucky yogurt....vanilla....at one point I even had to heat his yogurt to get him to eat it. I resort to vitamins ! This is a sensory issue and if anyone tells you it's behavioural they are 100% wrong!

Anonymous said...
i think intruducing healthy food very early makes a big difference but there many things that can be done. I recommend mixing the good with the bad steam veg and rice with chicken nuggets you have to try it wont be easy but not impossible. I do not recommend forcing the child it doent work with my son so i wont work with your child either

Anonymous said...
Yep! My 9 yr old basically eats carbs and that's it. We rely on Carnation breakfast milk and vitamins for nutrition at the moment.

Anonymous said...
My 13 yr daughter only eats a handful of 'healthy" foods so i just rotate these meals around. You would think it would be boring but she likes the predictability. It wasnt worth the stress of the tantrums of force feeding when she was younger...... my mum.says i am too soft but at least meal times are quality family time over trauma time. Her blood tests for iron, vit D etc always come back good which surprises me. I had to think smart, be crrative at times and accept reality to stay sane.....
The hardest thing is dealing with judgement from others..... but i know I am doing the best I am and she certainly isnt malnourished or starving...Good to hear from others with the same issues and that I am not alone. ... and that its NOT my fault.....
X

Anonymous said...
Occupational therapy can help tremendously with decreasing oral sensitivities (when they won't eat certain foods because of how they feel) and expanding picky diets beyond chicken nuggets, mac and cheese, etc. It is costly if insurance doesn't cover it though. I agree that it is sensory (not behavioral) and the focus should be on desensitizing the child to texture, smell, and even sight of foods in order for them to attempt to expand their food choices.

Anonymous said...
Maybe try social stories about children trying a new food and liking it?

Anonymous said...
Don't under estimate milk and bread. I know it's not perfect but you are doing your best.....I know you are!!!! Xx

Anonymous said...
Mine is sixteen and it's chicken, cheeseburgers or pizza

Anonymous said...
As a wee one mine ate everything now my son is 14 and I'm totally jealous that your kids eat pizza and burgers. Mine wants to try pizza but it takes a long time to work up to it and if you open the box and he sees it. That's game over. I feel badly for our kids with the stresses they go through and the things they are missing out on.

Anonymous said...
Yes my 6 year old would never try pizza, or any 'meal'...just bread, milkshakes and some fruit.

Anonymous said...
My 9-year-old is super picky also. His diet was limited but he would eat a couple vegetables and fruits. About a year ago though he felt bad all the time and after a million tests, we found out he had very low iron and needed iron drops. These drops tasted so awful that he swore up and down he would eat better if he could stop taking them and he made an actual real effort to try new things. Now he will eat more of a variety and even though he doesn't love these foods I just remind him that it's that or the drops and it motivates him. His iron levels have been good every since. It's still a chore. Everything has to be so plain. No foods mixed together. No spice.

Anonymous said...
My 9 year olds diet is very limited. Dry bread, milk, beef burgers and cheese pizza. I got myself into a state thinking I needed him to try other foods and so many people saying ' he should eat what he is given or go hungry' and making me feel bad about his diet. When I saw his dr he had lost weight, the dr told me not too worry and feed him what he likes so he is getting the calories needed. I am so glad I listened, he is a much calmer child at mealtimes without being challenged, he put back on the weight he had lost. He has also started to ask to try new foods , he recently ate an apple ( I wanted to cry!!!) he also asked for me to blend 1/2 a banana in his milk, it wasn't a hit but he still tried something! My advice to anyone having a hard time or worrying is too ignore all the people giving their 'perfect parent' advice and just let your child eat what they like and come to you when they are ready for change x x x

Anonymous said...
My son has always been very picky too, and it got down to him only eating rice crackers. He lost a great deal of weight and as it turns out he has ulcerative colitis, diagnosed at 8 years. Once i sorted his flares and he takes probiotics and magnesium, his appetite is now much better. He's almost 14. I juice a combo of fruit and veg every morning now, and if it's got pineapple in it, and beetroot or purple carrot in it to make it pink, he enjoys drinking it.

Anonymous said...
I have heard a gluten free diet helps with Asperger's. Have u tried that?

Anonymous said...
I know from experience that this is frustrating! I have heard and tried it all from having them help shop, help cook, grow it! And so far nothing works... but, your son is eating and although it is repetitious, it is relatively well rounded. Protein, grain, dairy, fruit. One thing that has helped is sneaking veggie puree into the mac and cheese (cauliflower, carrots, etc...) but that had to be done with care as not to alter the flavor too much! I also slowly added whole grain pasta so that it .


Anonymous said...
Because my 7 year old son is such a picky eater, and was underweight, his doctor recommended V8 Fusion. This way he can still be picky, but at the same time get his daily recommended amount of fruit and vegetables. I give him 8 oz in the morning with breakfast and 8 oz in the evening with dinner. We have also had the my food can't touch issue in our house. It was to the point where there was typically multiple small plates (one for each food) on the table. On Monday my son said "Mom, I think it's time I have all of my food on one plate." I was floored! After the initial shock, we were doing a victory dance in celebration. Wohoo!
 

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Navigating the Journey: Parenting a Child with Both ASD and ADHD

Parenting is often described as one of the most rewarding yet challenging experiences in life. The joy of watching a child grow and develop ...