Of course, not all moms and dads of children with ASD level 1, or high functioning autism (HFA), are under stress, but many are.
As one mother states, “You learn to live with a significant amount of stress and you throw yourself into your everyday job as a parent when you have a youngster with an Autism Spectrum Disorder. If you work outside the home, you work even harder - and you don't think much about taking care of yourself.”
Some moms and dads worry that they could have done something to prevent their youngster's problems. They also agonize over whether they could do more now. Some stress is to be expected. As long as you're sleeping and eating well, enjoying much of your day-to-day life, and finding support where you need it, your stress is probably not too overwhelming.
Are you too stressed? Ask yourself these questions:
Are symptoms of stress impeding your functioning?
Are you finding it hard to get through the day's activities?
Are you having a hard time eating, sleeping, or getting up in the morning?
If you're exhausted and overwhelmed on a regular basis, you're more susceptible to physical and mental disorders. You may need time and help to recharge your batteries and find coping mechanisms. And it's important to take action now for the future. After all, when you're the mother or father of a "special needs" youngster, you're in it for the long term.
An experienced professional can help give you concrete ideas for finding time and space for yourself. He/she can also work with you to develop specific coping strategies. Changes in attitude can make a big difference, and there are many ways to work on your own feelings. It may also be helpful to have an appropriate time and place to let out pent-up frustration that's so often a part of coping with a youngster with an Autism Spectrum Disorder.
It's important to find a psychologist, psychiatrist, or social worker who has specific experience in working with families affected by autism spectrum disorder. To find such a person, get in touch with local support groups and ask for advice. Check out online databases. Ask your family doctor for suggestions, too. Some states offer a service called "mobile therapy." This program brings therapists into your home to work with you and your whole family.
The main thing parents with an HFA youngster need to know is that they are not alone. There is help out there! Even if you are a single mom raising kids alone, there is help. It's up to the parent, however, to realize that it's not a sign of failure as a parent to need and accept help in caring for your child.
Discipline for a child on the autism spectrum is often very different than the way you would discipline a neurotypical child. So a parent is often left feeling helpless and not knowing what to do, and feeling they have nowhere to turn in getting a break from parenting. In fact, a lot of moms and dads actually feel guilty for even wanting a break, let alone taking one.
The idea of a few hours away from their youngster makes them feel as though they are failing him or her as a parent. For some reason, some parents feel that to parent their youngster, that means being around them and caring for them 24/7 without any outside help.
Moms and dads need to take a break! Hire a competent babysitter, even a nurse if needed, get family to help, ask a friend for help! The point is this: get out of the house alone or with your spouse for a few hours and enjoy yourself. You can’t change any of the issues your youngster may have, but you can get a break. You can get out a few hours a week alone to unwind and you can get help to allow you to get that much needed break.
There are no easy answers on how to raise a son or daughter on the spectrum. Every child is different, as is every parent in their parenting methods. But the stress level is invariably there. Handling the stress is necessary in order to provide good care not only for your youngster, but for yourself and the rest of the family as well.
Many parents go through a difficult time when their youngster is first diagnosed. But after a year or two, most do learn to cope, enjoy their youngster's achievements and their own lives, and have fun.
These "special needs" children are special indeed – and we love our children very much. But we as moms and dads need to be able to unwind and relieve the stress so that we are better able to parent. Never feel guilty for needing to ask for help!
Bottom line: If you're not the person you normally are, then that's a reason to get help, or at least consider that possibility.
Resources for parents of children and teens on the autism spectrum:
"According to the teacher, my child with Autism [level 1] tends to have a difficult time moving from one activity to the next (for example, from writing skills to Math problems to recreation time). Do you have any suggestions as to how his teacher can make these transitions less stressful for him?"
Transitions are very difficult for children with ASD. It is an interruption to their day and a change in their schedule. In order to minimize difficulty in transition, try to keep their schedule as routine as possible (e.g., doing 'writing' exercises first, solving 'Math' problems second, and 'reading' third ...in this order every time). And always let you son know ahead of time that a transition in routine is coming.
Using sensory integration techniques can be very helpful for some autistic children. It is best to have an occupational therapist work with you to first determine if your child is hyper-sensitive or hypo-sensitive. For example, does he crave movement and the feeling of different textures and stimulation, or does he avoid movement and textures.
Here is a summary of a case study:
A young student with ASD level 1 had a great deal of difficulty with the transition from home to school, and with transitions that occurred in his school day. The school created a sensory room that was just his. He craved movement, running and jumping on furniture, loved to feel smooth surfaces, and loved strong odors (in other words, he was hypo-sensitive).
In his sensory room, there was a large hammock for him to lie in that would hold him tight and swing. The ceiling was lined with colored lights. There were boxes with potpourri for him to smell.
He would spend 10 minutes in this room at the beginning of his school day, 10 minutes before lunch, and 10 minutes before returning home. While he was in the room, he was encouraged to take in as much sensory information as he could.
Once he left the room, he was calm and ready to learn. Prior to the intervention of the sensory room, the school was ready to expel him. With the sensory room in place, he became much more compliant, calm, and willing to work with teachers and peers.
This won’t work for every child, but demonstrates how some creative thinking can benefit even the most challenging behaviors. The important thing is to remember what works for your child, and incorporate that into his daily routine.
The scenario above is just one of dozens of examples of accommodations that schools can make if they are willing to put forth a little extra effort.
Resources for parents of children and teens on the autism spectrum:
PARENTS' COMMENTS: •Anonymous said... a first then card on his desk with Velcro pictures, first is the current task and then is the task they are switching to - not just subjects but include snack, lunch, packing up back pack, etc on pictures, as the current one is finished more the then to first and put the new then on. Does not have to think about the whole day, just what is happening now and what will happen next - then reminders from teacher about how long until next task is great, so something along the lines of 5 more min of math then we will be doing literacy, then again at 2 minutes if 2 reminders not enough, then maybe 3 •Anonymous said... A part of my daughters IEP is to give warning to finish her thought or assignment to them move to the next and it works most of the time. •Anonymous said... A visual timetable and an egg-timer or app with a timer can help. •Anonymous said... Could she set a timer for him? These kinds of guidelines for how much longer he has on one activity, before moving to the next has helped my son. •Anonymous said... Could they not give him a pictorial timetable so he knows what is happening and what comes next? It's something we used as a matter of course working with children with ASD and something I've used at home with my own son who has Aspies. If not then can they not just give him a warning? So "in 5 minutes we are going to stop doing x and we will start y" ? •Anonymous said... Does he have an IEP? Maybe a Para to help him??? •Anonymous said... Does she give him transistion cues? Does she say "in 5 minutes we will be doing _____" or something to that effect? That would probably go a long way. I know with my daughter (who remains undiagnosed since they changed testing, at least where we live) does much better when given cues •Anonymous said... Following. My son also struggles with this. •Anonymous said... How about a schedule of Today's Events on the board...depending on his age, he'll be able to look at it during the day and know what's coming next...Lord help the teacher though, if she gets spontaneous and changes things up! Also, a reminder from the teacher that, 'in 5 minutes is recess' could help to give a warning that another activity is coming soon... Hope this helps...it did for us! xxx •Anonymous said... I had a visual schedule when they were younger with transition cues. I still have to give my kiddos plenty of transition cues. I start around 10 min, 5 min, 1 min, and then transition. •Anonymous said... I Home School my son and it took care of all the problems with school. •Anonymous said... In addition to what everyone else said, I got a copy of the daily and weekly schedule and made cards for my son. We sat down the night before and went through what he would have and in what order the next day. After a few weeks, he was comfortable and confident in the schedule and didn't need the cards, though we did pull them out for things like field trips. Now he doesn't use them at all - hasn't all year. •Anonymous said... Mine relies on the visual timetable (do NOT forget to have it right!), timers and his amazingly fab teacher has given him his own clipboard that has pictures plus "tick boxes" that he carries around. He loves being given "jobs" to do as well so if the activity is coming to an end they say 5 minutes AND p could you do the checks to see if everyone's ready for ________. •Anonymous said... Most teachers are pre deciding that aspergers isn't something that needs special treatment. They are being allowed to shun our kids, they do it with ADHD too. Now the DSM-V is making it worse. They think because aspergers is a social delay and kids can talk, they are typical. If they only knew. Makes me angry. •Anonymous said... My oldest has ADHD and Aspergers ... for him over the years (going into 4th grade next school year) he likes to be told ahead a very detailed schedule of his school day or class... what is going to done first, middle, last. He also gets one on one pull out for writing and reading though he has an IEP for ADHD. You could get a 504 plan since Asperger's is back in the DSM Autism spectrum definition again.... •Anonymous said... My son had his schedule taped to his desk. The teacher would also announce the upcoming change in 3-5 minutes "class we're going to start on xyz in 3". He also had a timer on his desk for the rough days so he could see how much time he had. We even use the timer method for homework. •Anonymous said... My son has 5min down time between subjects. This seems to be effective and he transitions better. The problem we have is focusing long enough to do the work. •Anonymous said... my son has an aide, and is starting psychological visits this weekend for behavior issues, and focus/changing routine. •Anonymous said... My son is at an autism specific school, they have visual schedules and get reminders about when these changes will occur. Much like everyone has mentioned, I have no new suggestions but I can say that this is exactly how the specialist teachers deal with it. •Anonymous said... My son school has a set routine for each sessions ie 1st session is English 2nd is writing then break then maths and history then break the afternoon session does change but our teacher ensures my son knows what is happening after break so he is aware. It is the same every day this has helped my son good luck. •Anonymous said... My son struggles with this at school everyday. He has a visual timetable broken down for the whole school day. He also has a 5 minute reminder before an activity is about to end. Then a 2 minute one. His favourite subject is maths and hates writing. So getting him to stop maths is tricky but his 1-1 deals with it very well. Lots of reminders and visual aids are great. •Anonymous said... My son's teacher tapes a graphic organizer on his desk every day. It allows him to see what's going on for the day and helps with the transition from one activity to the next. •Anonymous said... Preparation is definitely key - use a timetable and give warnings or count down to changes, my son is 14 and I still do this now x •Anonymous said... Schools, summer camps... they all give my son a notice that they will be moving to another activity or room in a few minutes. Very accommodating to do this for us and him. •Anonymous said... She needs to get education on Aspergers first of all. Is she aware of his dx? She needs to do her homework on his needs. Does he have a 504 or iep. They need to be followed. It's up to the school to tweek their style to accommodate him and his needs. Schools are lacking badly in this area. He needs prompting, a written schedule with time coordinates reflecting when each subject starts. She can have a time timer to indicate how long between subjects, and the five minute warning, that's helpful for all kids, not just aspies. Shame on her for being uneducated, assuming she knows his dx. They put this on us to do their work, its better to homeschool, why bother with them. Smh. Sorry, this is a sore subject with me obviously. I'm not asking them to build their day around him, just be aware and make him feel like he's a part of the class, by simple, subtle accommodations. •Anonymous said... Sounds like if the parents don't do the leg work, our kids are all struggling. Something is wrong here. And Michelle, yes, that does solve all the school issues, but, why doesn't your son deserve to be with the other children in the school setting because they are too lazy to help him. Schools need to step up and make the necessary accommodations to support our children's learning. They wouldn't get away with it for any other dx in the world. Not one! Our kids are being, " left behind!" Unacceptable! •Anonymous said... Teacher needs to start giving advanced warnings about changes. Maybe at 10 , 5, 2, and 1 minute before hand. This way it's less of a shocker at change time. •Anonymous said... Teachers need to be better educated in this disability and how to accommodate your child. As parents we have to be diligent and observant on what is hapenning with them and clue teachers on what works. This school year is about over, but I recommend that when the new year begins you speak and email each teacher about your child's disability. I found a great resource online. The PDF package its called " A teacher's guide to Asperger's syndrome". It helps me tremendously to communicate and educate the teachers. You will have to be in constant contact to ensure your child us getting the accommodations he needs as school. Lots of good advice here. Good luck and hope for a better school year. •Anonymous said... There is a timer available with three programable lights on it. Makes a nice visual heads up. •Anonymous said... These are all great suggestions Visual reminders are great for our son who also has aspergers. So are the count down to switching actitivies •Anonymous said... Use a visual timetable, he can see what is coming next and tick off what has already been done, it breaks the day up into manageable 'bite size' chunks •Anonymous said... Visual schedules at school and great for home too! •Anonymous said... Warnings a must - Visual if at all possible. Substitutions should be announced at the start of the day, not sprung on the kids at the start of the lesson. Visual progression of the day helps too on the door or desk. Pictures to demonstrate the sequence of event are far more useful to the ASS child than times •Anonymous said... you are so right, because you can't see the disability, it's not there. With regard to transition, a 5 minute warning, either verbally or visually has helped my son. Please post your comment below…
There is probably no process as frustrating for parents and educators alike as the IEP process. As a team effort, the IEP process is designed to help develop a program that is in the best interest of the child with ASD or [High-Functioning Autism]. All too often, the schools experience a lack of resources or have other challenges, which leaves the parent feeling that she is not receiving the support that is needed.
There are several common mistakes parents and teachers make when creating an IEP (or going through the IEP process). These include the following:
1. The parent signs the IEP when she doesn't totally agree with it.
Never sign an IEP at the meeting, especially if you don't agree with it. A verbal commitment that "we will work out the fine details later" is not binding, but your signature is. Remember that you have three days to review the IEP before signing it. It is always a good idea to take the IEP home and review it one more time, even if you think that everything is fine. Never feel pressured into signing an IEP!
2. The short-term goals will not meet long-term goals.
If a specific long-term goal is agreed upon, make sure that the short-term goals adequately support progress towards the long-term goal.
3. The parent fails to review a preliminary IEP.
Without a preliminary look at what is being proposed for your ASD youngster, your first opportunity to see the IEP is in the IEP meeting where you are expected to agree to - and sign - the IEP. This puts you in an unfavorable position, because you can feel pressured to agree to items without having time to really think through their implications. Always ask for a preliminary copy prior to the IEP meeting, and never feel like you have to sign at the meeting.
4. The IEP contains goals that cannot be measured.
This is the most common mistake made when creating IEPs. It is easy to make - and accept - overly generalized goals and achievement objectives and believe they are acceptable. Many IEPs contain goals and objectives like, "...will improve letter recognition." This is a vague goal which can be claimed as "achieved" with very little progress actually having been made. A better goal would be something like, "...will recognize 9 out of 10 random letters shown, 4 out of 5 times." This is specific and measureable.
There may be times when you will not agree with an IEP. All schools have a due process procedure you can follow that will progressively escalate your complaint through the appeals process. If you can’t agree on your IEP, the school will provide you the information and steps you need to begin the due process procedure.
Many moms and dads find the assistance of an advocate or attorney to be an invaluable tool in their dealings with IEPs and education issues. The decision to utilize an advocate or attorney is a personal decision, but one that has many merits.
The IEP process is critical to the educational success of the child. Parents and educators need to
develop an IEP process that (a) enables both parties to feel as though their
concerns are heard, and (b) ensures that the child's needs are being met.
Resources for parents of children and teens on the autism spectrum:
"We think our daughter may have a form of autism due to her severe shyness, excessive need to have things just so, certain rituals she has with food, major touch sensitivity, a lot of anxiety, just to name a few. What are some of the signs to look for to help us decide if an assessment is in order?"
Females with ASD, or High-Functioning Autism. often present with a unique set of characteristics that can make diagnosing their disorder very difficult. In addition, their strengths often mask their deficits.
There has been considerable discussion among professionals about the way girls with ASD demonstrate their major characteristics. Some girls have obvious social difficulties, whereas others appear to have excellent skills because they imitate the behaviors of others (often without understanding them).
There are many females who do not receive a diagnosis, possibly because, compared to males, (a) they have fairly good social skills (particularly when interacting with adults in a one-to-one situation), (b) their special interests are different, and (c) their clinical presentation is different. Sometime during childhood, a female with autistic traits will begin to know she is different compared to her peers. For example:
1. Due to adopting an alternative persona, she may begin to have problems of self-identity and low self-esteem
2. Due to observing and analyzing social behavior and trying not to make a social error, she may become emotionally exhausted
3. During the stress of adolescence, she may develop routines and rituals around food and a special interest in calories and nutrition that develops into the signs of an eating disorder
4. Her interests may be different to her peers in terms of intensity and quality of play
5. She may be an avid observer of human behavior and try to decipher what she is supposed to do or say
19. Have a faster rate of learning social skills than males
20. Have a single friend who provides guidance and security for them
21. Have a special interest that is more likely to be unusual in terms of intensity rather than focus
22. Have difficulty knowing what someone else may be thinking or feeling
23. Have difficulty making friends
24. Have difficulty managing feelings
25. Have difficulty showing as much affection as others expect
26. Have difficulty taking advice
27. Have difficulty with writing skills
28. Have extremely detailed imaginary worlds
29. Have imaginary friends
30. Have interests that are very similar to those of neurotypical girls (e.g., animals, dolls, classical literature), and therefore are not seen as unusual
31. Have what is classified as a "male brain"
32. Make reliable and trustworthy friends
33. Mimic or even try to take on all the characteristics of someone they are trying to emulate
34. Notice sounds that others do not hear
35. Read fiction to help them learn about inner thoughts, feelings and motivations
36. Show little interest in fashion
37. Speak their minds (sometimes to the point of being rude)
38. Still need to be directly taught certain social skills
39. Try to understand a situation before they make the first step
40. Use doll play to replay and understand social situations
Resources for parents of children and teens on the autism spectrum:
It is hard to know if kids with ASD (high functioning autism) are as lonely as their moms and dads believe they are. Therapists do know that playing with a friend, making a friend and being with a friend are "overwhelming skills" for ASD children. Kids without autism make no sense to "autistics," because they are totally preoccupied with their own agendas.
Teaching ASD children social skills is a big task for moms and dads and educators. It is not like teaching the child how to ride a bicycle or tie a shoe, but rather trying to teach something no one formally taught you. How do you teach someone how to read a room, especially someone who has no understanding of other individual's emotions and body language?
Kids with autism have no idea about how to reason socially and come up with proper courses of action in social situations (e.g., one guy with ASD level 1 got lost in the school corridors on his way to gym. He had forgotten the route, but he did not think to simply follow his classmates to the gym).
Yet therapists emphasize the need to teach ASD children social skills because they desperately need them to get along in life. The child's lack of social understanding virtually colors every other experience in his/her life. Yet the question of whether kids on the spectrum are truly lonely and want friends is a different discussion. Like all kids, some are extroverted and others are more withdrawn. Like all kids, they probably vary in their need for social interactions.
When researchers ask kids with ASD about friendship, they are usually very negative. They think of friendship with other kids as too much work and often prefer grown-ups. For example, when a teacher was forcing a six-year-old to participate in a playgroup with other kids, he said, "I hate kids. I don't play with kids. I'm not a kid. I was born a grown-up."
Michael, a fourteen-year-old with Aspergers advises other Aspergers children, "If you like being on your own, then be happy with your own company and don't let anyone convince you its wrong." His advice to ‘pushy moms and dads’ is "Never force your youngster to socialize. Most ASD children and autistic individuals are happy to just be by themselves."
However, these kids might be happier by themselves because social activity has caused them so much pain in the past. In one study, gifted kids with ASD could not describe friendship in positive terms such as "a friend is someone who is nice to you." They had only negative associations such as "a friend is someone who does not hit you." These kids told interviewers only about how mean other children had been to them and seemed to lack any idea of what reciprocal friendship really means.
Yet as autistic children go through the teen years, most realize that they are missing out by not fitting in. It is at this point in their lives that they crave friendships with peers, yet this unfulfilled desire on top of high school pressure to conform, constant rejection and harassment can often cause depression in ASD teenagers. They grow more isolated even as they crave more interaction with other teenagers. Young kids with ASD often believe everyone in their class is the same and everyone is a potential friend. ASD teenagers know better.
Research shows that the more time a person with ASD spends socializing, the happier she is. Autistic children can and do form friendships. When they do, research shows that even one friendship will speed up their entire social development.
People married to someone with ASD often talk about their own feelings of loneliness. They tell counselors that marriage to a person with autism feels like living alone. An ASD husband/wife often does not attend to details like anniversaries, may not connect with the couple's kids on an emotional basis, and may not benefit from marriage counseling. A parent of a youngster with ASD may feel rejection when their youngster refuses to cuddle or express affection.
The youngster's needs are unrelenting and yet the moms and dads' rewards are sometimes rare. Brothers and sisters hide their lonely feelings about living in a family where their autistic sibling monopolizes their moms and dads' precious time and they miss the normal give and take of sibling relationships. Many siblings believe that the ASD child's “disability” is an advantage …a passport to special attention, recognition and privilege.
Helping kids with autism spectrum disorder develop social skills will no doubt become easier in the future. Every day educators are developing better techniques. Researchers are closing in on the genetic and environmental causes of autism and may someday develop a cure. There is promising new research being conducted in a study on "Friendship and Loneliness in Individuals with ASD." Perhaps someday the answers will be clearer for individuals with autism and those who love them.
ASD Teens and Social Isolation—
In the teenage world where everyone feels insecure, teens that appear different are ostracized. Autistic teens often have odd mannerisms. For example, they may talk in a loud un-modulated voice, avoid eye contact, interrupt others, violate others’ physical space, and steer the conversation to their favorite “weird” topic. These teens may appear willful, selfish and aloof, mostly because they are unable to share thoughts and feelings with others. Isolated and alone, many of these adolescents are too anxious to initiate social contact.
Many teens on the spectrum are stiff and rule-oriented and act like little grown-ups – a deadly trait in any adolescent popularity contest. Friendship and all its nuances of reciprocity can be exhausting for a person with ASD, even though he wants it more than anything else.
Resources for parents of children and teens on the autism spectrum:
Parents who have discovered that their young child is "gifted" because he/she may be able to recite the alphabet at 18 months of age - or can read words by the age of 2 - may want to reassess the situation.
Hyperlexia often coexists with ASD level 1 [high-functioning autism]. Hyperlexia is not seen as a separate diagnosis; however, with current fMRI research revealing that hyperlexia affects the brain in a way completely opposite to that of dyslexia, a separate diagnosis may be on the horizon.
Children with hyperlexia may recite the alphabet as early as 18 months, and have the ability to read words by age two and sentences by age three. Many are overly fascinated with books, letters, and numbers. However, the child’s ability is looked at in a positive light, so many moms and dads delay in getting their “precocious” youngster any help because they believe that he/she is a blooming genius.
Hyperlexia has many characteristics similar to Autism, and because of its close association with Autism, hyperlexia is often misdiagnosed. The main characteristics of hyperlexia are an above normal ability to read coupled with a below normal ability to understand spoken language. Many of the social difficulties seen in hyperlexic children and teens are similar to those found in Autism. Often, hyperlexic kids will learn to speak only by rote memory and heavy repetition. They may also have difficulty learning the rules of language from examples or from trial and error.
Hyperlexic kids are often fascinated by letters or numbers. They are extremely good at decoding language and thus often become very early readers. Some hyperlexic kids learn to spell long words (e.g., elephant) before they are two years old and learn to read whole sentences before they turn three.
Hyperlexia may be the neurological opposite of dyslexia. Whereas dyslexic kids usually have poor word decoding abilities but average or above average reading comprehension skills, hyperlexic kids excel at word decoding but often have poor reading comprehension abilities.
Some experts denote three explicit types of hyperlexics, specifically:
Type 1: Neurotypical kids that are very early readers.
Type 2: Kids on the autism spectrum, which demonstrate very early reading as a splinter skill.
Type 3: Very early readers who are not on the autism spectrum though there are some “autistic-like” traits and behaviors which gradually fade as the youngster gets older.
The severity, frequency, and grouping of the following symptoms will determine an actual diagnosis of hyperlexia:
A precocious ability to read words far above what would be expected at a youngster’s age
Abnormal and awkward social skills
An intense need to keep routines, difficulty with transitions, ritualistic behavior
Auditory, olfactory and / or tactile sensitivity
Difficulty answering "Wh–" questions, such as "what," "where," "who," and "why"
Difficulty in socializing and interacting appropriately with people
Echolalia (repetition or echoing of a word or phrase just spoken by another person)
Fixation with letters or numbers
Listens selectively / appears to be deaf
Memorization of sentence structures without understanding the meaning
Normal development until 18-24 months, then regression
Self-stimulatory behavior (hand flapping, rocking, jumping up and down)
Significant difficulty in understanding verbal language
Specific or unusual fears
Strong auditory and visual memory
Think in concrete and literal terms, difficulty with abstract concepts
Youngster may appear gifted in some areas and extremely deficient in others
Hyperlexia appears to be different from what is known as hypergraphia (i.e., urge or compulsion to write), although as with many mental conditions or quirks, it is possible that this is more a matter of opinion than strict science.
Despite hyperlexic kid’s precocious reading ability, they may struggle to communicate. Their language may develop in an autistic fashion using echolalia, often repeating words and sentences. Often, the youngster has a large vocabulary and can identify many objects and pictures, but can’t put their language skills to good use. Spontaneous language is lacking and their pragmatic speech is delayed. Between the ages of 4 and 5, many kids make great strides in communicating and much previous stereotypical autistic behavior subsides.
Often, hyperlexic kids have a good sense of humor and may laugh if a portion of a word is covered to reveal a new word. Many prefer toys with letter or number buttons. They may have olfactory, tactile, and auditory sensory issues. Their diets may be picky, and often potty training can be difficult. Social skills lag tremendously. Social stories are extremely helpful in developing effective age-relative social skills, and setting a good example is crucial.
Many moms and dads have had their hyperlexic kids go through numerous evaluations, with various confusing and contradictory diagnoses applied – ranging from Autistic Disorder to ADHD, or language disorder. In other cases, there is no diagnosis applied except “precociousness” or “gifted.”
Controversy exists as to whether hyperlexia is a serious developmental disorder like autism, or whether it is in fact a speech or language disorder of a distinct and separate type, or, in some cases, it is simply advanced word recognition skills in a normal (neurotypical) youngster, especially when sometimes accompanying “autistic-like” symptoms are present.
Treatment—
The first step in treatment is to make the proper diagnosis. Then management of the condition follows. When precocious reading ability and extraordinary fascination with words presents itself in a young son or daughter – especially when accompanied by other language or social problems that might suggest an autistic spectrum disorder – a comprehensive assessment by a knowledgeable professional or team familiar with the differential diagnosis of the various forms of hyperlexia is indicated.
Resources for parents of children and teens on the autism spectrum:
It is not uncommon for ASD youngsters to experience great pain and discomfort that goes unreported, unnoticed by others, undiagnosed, and untreated. Enduring pain and allowing it to become chronic is extremely detrimental to your youngster's ability to function, grow, and learn. Untreated pain and discomfort will also seriously affect your child's behavior and ability to communicate with others.
Of all the “meltdown triggers” that drive behaviors, experiencing pain and discomfort is extremely significant. This is because pain affects behavior. Think of the last time your youngster was sick and feeling significant pain or discomfort (e.g., flu symptoms, migraine, menstrual cramps, pulled muscle, etc.). Now, think of how being in such pain manifested in his/her behavior. Perhaps he/she:
Felt especially vulnerable
Just wanted to be left alone
Just wanted to crawl under the covers and stay there
Lashed out or snapped at family members
Lashed out or snapped when anyone made a demand of him/her
Was especially hypersensitive to light or sound
What if the pain and discomfort is not treated and is allowed to persist due to a high pain tolerance?
Revisit the list above and consider how your child’s behavior might intensify the longer he had to endure the pain. Not only would he feel lousy, he would also feel disoriented and distracted. His attention would be focused on trying his best to cope and manage the pain that threatens to overwhelm him. Slowly but surely, any – or all – of the following could occur:
he might stop caring about his appearance
his ability to function, care for yourself, or interact with others would be greatly reduced
his mental health would be affected, eroded, and over time, seriously impaired
his self-esteem would suffer
the culmination of feeling physical pain would converge with mental anguish, leaving him weak and vulnerable
One prevalent form of pain in kids on the autism spectrum occurs with allergies. The challenge is that many moms and dads do not recognize this and see their youngster's symptoms in isolation, if at all (e.g., the youngster may frequently experience ear blockages and ear infections, sometimes from a very young age).
Perhaps the youngster manifested outwardly visual symptoms (e.g., red, sore, pussy ears that drained spontaneously). The youngster may have been treated with antibiotics or had tubes in her ears to relieve pressure. More often than not, the ear problems were one symptom within a cluster of other symptoms, indicative of allergies.
In addition to ear blockages and infections, the Autistic youngster may also manifest symptoms of an allergy, such as:
Congestion and runny nose
Coughing and sneezing
Headaches and migraines
Red, itchy, or runny eyes
Sinus pressure over or under eyes
Sore throat
Swollen glands
You might have discovered that several of these symptoms manifest together at the same times of the year. The allergens could be absolutely anything — from one indicator (e.g., seasonal pollen) to an exhaustive collection of many known indicators. While you may have been treating one or two symptoms, you may not have been addressing the bigger picture (i.e., chronic allergies).
Treatment is available to relieve many of the physical side effects of severe allergies, but testing is necessary to determine the allergen type and degree of severity. This may be problematic for many kids on the spectrum, especially if they have had unpleasant experiences with doctors who were not as patient or sensitive as they should have been.
Some of the testing and treatment may involve drawing blood or receiving steroid shots, which may be an overwhelming experience (and perhaps not worth the potential trauma). Another type of testing is non-intrusive and involves the child holding various physical examples of allergens to ascertain a reaction. It is also possible that standard, over-the-counter medications may work to contain some or all symptoms of the allergies — at least until the child or teen can determine if she wishes to pursue other forms of obtaining relief.
Another prevalent factor that drives pain and discomfort in ASD kids is the gastrointestinal issues (e.g., severe gas and cramping, bloating, constipation, impaction, diarrhea, etc.). A number of such kids have an inability to properly digest dairy and wheat-based food products (among others), such that the enzymes from these foods “leak” through the gut and into the bloodstream, potentially creating an adverse reaction described by some as an “opiate” effect. In clinical trials, the dairy products are referred to as “casein,” and the wheat-based foods are referred to as “gluten.”
Moms and dads may find themselves frustrated with a youngster who seems “inappropriately” or embarrassingly gassy or who seems to have bowel complaints. Again, the youngster is not being deliberately difficult; there is a legitimate issue that is driving pain and discomfort.
As with pursuing the treatment of allergies, there are options that range from restrictive to less intrusive forms of treatment. In some instances, bacteria of the lower gastrointestinal tract may be responsible for creating these issues. This can be an excruciatingly painful experience that may cause a youngster to double over in pain.
If the youngster is unaware of the root of the problem or doesn't know how to describe the pain in the moment, his “behavior” may be misinterpreted instead of correctly identified as a communication. Consult with your pediatrician to determine the appropriate treatment to get rid of all traces of the bacteria.
The procedures to determine the cause of the gastrointestinal tract problems may be very physically intrusive. You may want to explore less invasive methods of intervention as an alternative if the youngster has not had a good history with medical practitioners. These may include:
Avoiding foods with dyes or preservatives
Considering soy and other substitute foods, perhaps for a select time frame, to note any cause and effect
Cutting back on red-meat proteins in favor of chicken, fish, or other food options
Increasing consumption of natural food fiber found in fruits and vegetables
Increasing fluid intake, especially water, which may prove helpful as well
Promoting massage and exercise
Pursuing a diet free of dairy and wheat, in partnership with the youngster and in consultation with a dietician or nutritionist
Using any over-the-counter products designed to aid gas relief or alleviate bowel distress, like fiber-based additives
Some gastrointestinal problems may be compounded by the youngster's fears and anxieties around toileting. Children on the spectrum tend to be careful observers. Most will attempt toileting — especially urinating — in their own way and in their own time, just at a time later than what might be considered developmentally appropriate. Still others may appear to deliberately wet or soil themselves. But understand that your youngster is not deliberately being insubordinate. He really is struggling and feeling just as frustrated as you.
Here are some tips that may help clarify your understanding of toileting issues in the youngster:
If the youngster is not feeling safe and comfortable and in control, withholding body waste is one way of independently attempting to gain control.
Your youngster may be frightened by the toilet, believing that he may fall in and get sucked down.
Your youngster may be in a “perfectionism” mode, unwilling to admit his need to use the toilet when asked, or embarrassed to confess the need.
Your youngster may be overwhelmed by the loud roar of a flushing toilet.
Your youngster may not be connected enough with his body to consistently receive the physical “signals” or pressure indicating the need to evacuate waste.
Your youngster may panic, believing that in making a bowel movement, he is shedding a vital, living piece of his body.
To counteract these and other issues, it will be important to deconstruct the whole toileting process for your youngster using very basic, visual information. Explain the process of how and why the body rids itself of waste. Use your own visuals (e.g., graphics) to explain the human digestive system and name the internal parts of the body. Reinforce with your youngster that the process of eliminating waste from the body is natural. Also reinforce that using the toilet is a private matter. It is not to be discussed freely in public. It should only be discussed with close, trusted individuals (list them in writing), usually if there is cause for concern like constipation, impaction, diarrhea, etc.
Some of these kids will want specific assurances about exactly what happens to their stool once it gets flushed away (e.g., “where does it go?” … “what becomes of it?”). You may need to research this yourself, or look it up on the Internet with your youngster. If you are uncertain if your youngster experiences the sensations indicating the need to use the bathroom, first ask him about it. Talk about the ways in which you know your body gives you the appropriate signals, and plan daily, gentle exercises designed to better connect your youngster with his body (e.g., yoga, breathing, stretching exercises, etc.).
There may be some adaptations you can make in giving your youngster control in toileting (e.g., adjusting the water pressure to avoid a rushing roar when the toilet is flushed, partnering with your youngster to select a new toilet seat that is more comfortable and makes the toilet opening less imposing).
Keeping a sticker or piece of tape handy when in public will empower your youngster's encounters with automatic flush toilets, which can create great anxiety for being so unpredictable. Simply have your youngster cover the toilet sensor with the adhesive, and remove it when ready. The toilet will be disabled until the sticker is removed.
As your youngster grows into an adult, she should be able to identify and advocate for her own relief from pain. As with toileting, it will be useful to visually explain how the brain and body usually work together to send signals indicating pain. Sometimes the signals are accompanied by visuals that help reinforce that something is wrong (e.g., bleeding, a cut or blister). Other times, the signals may be exclusively inside the body and unseen, just felt. The Internet or your local library should be a resource in accessing images, books, or videos that describe these physiological processes.
There are some kids with ASD who are inconsistent in reporting pain – if they report it at all. Here’s why:
As with toileting, your youngster may not have a nervous system he feels fully connected with, such that the pain is delayed or not “registering” properly.
Being inherently gentle and exquisitely sensitive, your youngster may have been severely traumatized by experiences with doctors and nurses so that he considers enduring the pain the better option.
Your youngster may not realize that what he's feeling in the moment is anything any different from what anyone else feels.
Your youngster may not understand that there exists an unwritten social expectation that all people report pain and discomfort in order to gain relief.
In addition to educating your youngster about how the body works when communicating pain, it will also be important to partner with your youngster in gaining self-awareness and control leading to lifelong self-advocacy. This means reinforcing that it is good and desirable to identify and report one's own pain. The message needs to be loud and clear: “It is not okay to live with chronic pain.” Also, it will help considerably in relieving your youngster’s anxiety if you endeavor to demystify the entire concept of going to the doctor in advance of an appointment. You may do this by partnering with your youngster to consider doing the following:
Arrange to get as many specifics about the appointment as possible, including approximate wait time and details of any procedures, along with literature and other visuals.
Assign your youngster the responsibility of reading you driving directions to and from the office location, noting street names and landmarks.
Because of downtime while waiting, suggest your youngster bring something to read or work on, possibly to share with the doctor as well.
Before making the trip, partner with your youngster to develop a list of questions to ask the doctor, nurse, or receptionist. If there's the opportunity to do this, allow your youngster to take the lead in gleaning the information desired.
Discuss flexibility of time frames with your youngster, and empower him to keep track of the time during the actual appointment.
Gain clear information about the tentative sequence of events in order to visually list these out with your youngster (he can bring this list with him on appointment day).
If at all possible, arrange to meet the doctor, the nurse practitioner, and — at the least — the receptionist. Again, provide the opportunity for your youngster to take pictures.
Once at the office, empower your youngster by allowing him to take photographs inside and out. Review these later at home (where your youngster feels most comfortable), eliciting details from him.
Schedule a pleasurable activity for your youngster to follow the appointment. Ensure that the activity occurs regardless of how well you think your youngster does or if he “earned” it.
Suggest that your youngster photograph a typical private room, being remindful that, next visit, you may not get that exact room but one very much like it.
With your youngster, schedule a time to drive to the doctor's office before the appointment day.
This is a lot of prep work and a significant investment of time, but in the long run, this investment of time up front will go a long way in supporting your youngster to feel safe and comfortable and in control. Empowering her to take the lead during this process promotes her ownership and sense of self-advocacy.
Resources for parents of children and teens on the autism spectrum:
Autism spectrum disorder is a neurological
condition that can cause a range of social, communication, and behavioral
challenges. Many autistic children struggle with anxiety, sensory processing
issues, and difficulty transitioning between activities. As a result, everyday
tasks can be a challenge. However, there are many things that parents can do to
make their autistic child’s life happier and more fulfilling. Here are five of
the most important:
Teach Them Coping Skills for
Dealing With Difficult Emotions
Autistic children often have difficulty
understanding and expressing their emotions. As a result, they may become
overwhelmed by negative emotions like anxiety or anger. It is essential to
teach your child coping skills for dealing with these emotions. This can reduce
or prevent
meltdown episodes and help your child lead a happier life. There are
many different coping skills that you can teach your child. The most popular
include deep breathing, muscle relaxation, and positive self-talk.
For children with autism, having a daily routine
can be invaluable. Predictability and routine can help to reduce anxiety and
provide a sense of security. When establishing a daily routine, it is crucial
to involve your child in the process as much as
possible. This will help them to understand the expectations and feel more
comfortable with the new routine. Start by brainstorming together what
activities should be included in the daily routine. Then, create a visual
schedule that your child can follow. Place this schedule in a prominent
location, such as on the fridge, so that everyone in the family can refer to it
throughout the day. It is also essential to be flexible and adjust the routine
as needed.
Care for Their Health Needs
Most autistic children have sensory processing disorder, which means
that they are overloaded by certain stimuli and under-sensitive to others. This can make everyday
activities challenging, like going to the grocery store or getting a haircut.
One way to ease your child’s anxiety is to equip them with earplugs or
noise-canceling headphones. This will help reduce the amount of sensory information
they are taking in and make it easier for them to concentrate on the task.
Visit HearCanada to find the best earplugs that will
work for your child’s individual needs.
Enroll Your Child in Auditory
Integration Training
Auditory Integration Training (AIT) is a therapy
that can help autistic children with sound sensitivity. The therapy involves listening to music through headphones for a
set amount of time each day. AIT is effective in reducing sensitivity to sound,
as well as improving communication and social skills. Talk to your doctor or a
local therapist if you think your child would benefit from AIT.
Use Visual Supports
Many autistic children have difficulty
understanding spoken language. As a result, they may benefit from the use of visual
support. This can help with communication, behavior, and daily
routines. For example, you could use a picture schedule to help your child
understand the sequence of activities for the day. You could also use visual
cues to help your child stay on task during an activity. There are many
different types of visual supports that you can use. Talk to your child’s
therapist to find out which ones would be most helpful for your family.
Implementing these five strategies will help to
make your autistic child’s life easier. However, it is essential to remember
that every child is different. What works for one child may not work for
another. Talk to your child’s therapist to find out what strategies would be
most helpful for your family. Patience, love, and understanding are crucial to
raising a happy and healthy autistic child.
Of course, not all moms and dads of children with ASD level 1, or high functioning autism (HFA), are under stress, but many are. 
.jpg)
