Crucial strategies for parents who recently learned their child has Aspergers or High-Functioning Autism:
There are many things moms and dads can do to help their kids with Aspergers and High-Functioning Autism (HFA) overcome their challenges and get the most of life. From learning all you can about autism spectrum disorders to getting your youngster into treatment right away, you can make a big difference.
It’s also important to make sure you get the support you need. When you’re looking after a youngster with Aspergers or HFA, taking care of yourself is not an act of selfishness—it’s a necessity. Being emotionally strong allows you to be the best mother or father you can be to your youngster in need.
If you've recently learned that your youngster has (or might have) the disorder, you're probably wondering and worrying about what comes next. No parent is ever prepared to hear that a youngster is anything other than happy and healthy, and a diagnosis of an autism spectrum disorder can be particularly frightening. You may be unsure about how to best help your youngster, or you may be confused by conflicting treatment advice. Also, you may have been told that the disorder is an incurable, lifelong condition, leaving you concerned that nothing you do will make a difference.
Unprepared moms and dads often have numerous questions about Aspergers and HFA once they have discovered it now affects their family. For example:
How will my youngster learn best (e.g., through seeing, listening, or doing)?
What are my youngster’s strengths?
What are my youngster’s weaknesses?
What behaviors are causing the most problems?
What does my youngster enjoy and how can those activities be used in treatment?
What important skills is my youngster lacking?
While it is true that the disorder is not something a person simply "grows out of," there are many treatments that can help kids learn new skills and overcome a wide variety of developmental challenges. From free government services to in-home behavioral therapy and school-based programs, assistance is available to meet your youngster's special needs. With the right treatment plan, and a lot of love and support, your youngster can learn, grow, and thrive.
As the parent of a youngster with Aspergers, HFA, or related developmental delays, the best thing you can do is to start treatment right away. Seek help as soon as you suspect something’s wrong. Don't wait to see if your youngster will catch up later or outgrow the problem. Don't even wait for an official diagnosis. The earlier kids on the autism spectrum get help, the greater their chance of treatment success. Early intervention is the most effective way to speed up your youngster's development and reduce the symptoms.
Tips for Parents—
1. Accept your youngster – quirks and all. Rather than focusing on how your youngster is different from other kids and what he or she is “missing,” practice acceptance. Enjoy your kid’s special quirks, celebrate small successes, and stop comparing your youngster to others. Feeling unconditionally loved and accepted will help your youngster more than anything else.
2. Become an expert on your youngster. Figure out what triggers your child's “bad” or disruptive behaviors and what elicits a positive response. What does he find stressful, calming, uncomfortable, and enjoyable? If you understand what affects your youngster, you’ll be better at troubleshooting problems and preventing situations that cause difficulties.
3. Don’t give up. It’s impossible to predict the course of the disorder. Don’t jump to conclusions about what life is going to be like for your youngster. Like everyone else, kids on the spectrum have an entire lifetime to grow and develop their abilities.
4. Learn about the disorder. The more you know about it, the better equipped you’ll be to make informed decisions for your child. Educate yourself about the treatment options, ask questions, and participate in all treatment decisions.
5. Provide structure and safety. Learning all you can about the disorder and getting involved in treatment will go a long way toward helping your youngster. Additionally, the following tips will make daily home life easier for both you and your youngster:
• Stick to a schedule. Kids with an autism spectrum disorder tend to do best when they have a highly-structured schedule or routine. Again, this goes back to the consistency they both need and crave. Set up a schedule for your youngster, with regular times for meals, therapy, school, and bedtime. Try to keep disruptions to this routine to a minimum. If there is an unavoidable schedule change, prepare your youngster for it in advance.
• Reward good behavior. Positive reinforcement can go a long way with kids on the spectrum, so make an effort to “catch them doing something good.” Praise them when they act appropriately or learn a new skill, being very specific about what behavior they’re being praised for. Also, look for other ways to reward them for good behavior, such as giving them a sticker or letting them play with a favorite toy.
• Create a home safety zone. Carve out a private space in your home where your child can relax, feel secure, and be safe. This will involve organizing and setting boundaries in ways your youngster can understand. Visual cues can be helpful (e.g., colored tape marking areas that are off limits, labeling items in the house with pictures). You may also need to safety proof the house, particularly if your youngster is prone to tantrums or other self-injurious behaviors.
• Be consistent. Kids with Aspergers and HFA have a hard time adapting what they’ve learned in one setting (e.g., the therapist’s office, school) to others, including the home. For example, your youngster may use sign language at school to communicate, but never think to do so at home. Creating consistency in your youngster’s environment is the best way to reinforce learning. Find out what your youngster’s therapists are doing and continue their techniques at home. Explore the possibility of having therapy take place in more than one place in order to encourage your child to transfer what he or she has learned from one environment to another. It’s also important to be consistent in the way you interact with your youngster and deal with challenging behaviors.
6. Find nonverbal ways to connect. Connecting with an Aspergers or HFA youngster can be challenging, but you don’t need to talk in order to communicate and bond. You communicate by the way you look at your youngster, the way you touch him or her, and by the tone of your voice and your body language. Your youngster is also communicating with you, even if he or she never speaks. You just need to learn the language.
• Figure out the need behind the tantrum. It’s only natural to feel upset when you are misunderstood or ignored, and it’s no different for kids on the spectrum. When they act out, it’s often because you’re not picking up on their nonverbal cues. Throwing a tantrum is their way communicating their frustration and getting your attention.
• Look for nonverbal cues. If you are observant and aware, you can learn to pick up on the nonverbal cues that kids with Aspergers and HFA use to communicate. Pay attention to the kinds of sounds they make, their facial expressions, and the gestures they use when they’re tired, hungry, or want something.
• Make time for fun. A youngster coping with this disorder is still a kid. For both kids and their parents, there needs to be more to life than therapy. Schedule playtime when your youngster is most alert and awake. Figure out ways to have fun together by thinking about the things that make your youngster smile, laugh, and come out of their shell. Your youngster is likely to enjoy these activities most if they don’t seem therapeutic or educational. There are tremendous benefits that result from your enjoyment of your youngster’s company and from your youngster’s enjoyment of spending unpressured time with you. Play is an essential part of learning and shouldn’t feel like work.
• Pay attention to your youngster’s sensory sensitivities. Many kids on the spectrum are hypersensitive to light, sound, touch, taste, and smell. Others are “under-sensitive” to sensory stimuli. Figure out what sights, sounds, smells, movements, and tactile sensations trigger your child's “bad” or disruptive behaviors and what elicits a positive response. If you understand what affects your youngster, you’ll be better at troubleshooting problems, preventing situations that cause difficulties, and creating successful experiences.
7. Create a personalized treatment plan. With so many different treatments available, and it can be tough to figure out which approach is right for your youngster. Making things more complicated, you may hear different or even conflicting recommendations from moms and dads and docs. When putting together a treatment plan for your youngster, keep in mind that there is no single treatment that will work for everyone. Each person on the spectrum is unique, with different strengths and weaknesses.
Your youngster’s treatment should be tailored according to his or her individual needs. You know your youngster best, so it’s up to you to make sure those needs are being met. You can do that by asking yourself the following questions:
A good treatment plan will:
Actively engage your youngster's attention in highly structured activities.
Build on your youngster's interests.
Involve the moms and dads.
Offer a predictable schedule.
Provide regular reinforcement of behavior.
Teach tasks as a series of simple steps.
Keep in mind that no matter what treatment plan is chosen, your involvement is vital to success. You can help your youngster get the most out of treatment by working hand-in-hand with the treatment team and following through with the therapy at home.
When it comes to treatment, there are a dizzying variety of therapies and approaches. Some therapies focus on reducing problematic behaviors and building communication and social skills, while others deal with sensory integration problems, motor skills, emotional issues, and food sensitivities.
With so many choices, it is extremely important to do your research, talk to treatment experts, and ask questions. But keep in mind that you don't have to choose just one type of therapy. The goal of treatment should be to treat all of your youngster's symptoms and needs. This often requires a combined treatment approach that takes advantage of many different types of therapy.
Common treatments for Aspergers and HFA include behavior therapy, speech-language therapy, play-based therapy, physical therapy, occupational therapy, and nutritional therapy.
8. Find help and support. Caring for a youngster with Aspergers or HFA can demand a lot of energy and time. There may be days when you feel overwhelmed, stressed, or discouraged. Parenting isn’t ever easy, and raising a youngster with special needs is even more challenging. It’s essential that you take care of yourself in order to be the best parent you can be.
Don’t try to do everything on your own. You don’t have to! There are many places that families of "special needs" children can turn to for advice, a helping hand, advocacy, and support:
• Respite care – Every parent needs a break now and again. And for moms and dads coping with the added stress of an autism spectrum disorder, this is especially true. In respite care, another caregiver takes over temporarily, giving you a break for a few hours, days, or even weeks. To find respite care options in your area, see the box to the right.
• Individual, marital, or family counseling – If stress, anxiety, or depression is getting to you, you may want to see a therapist of your own. Therapy is a safe place where you can talk honestly about everything you’re feeling—the good, the bad, and the ugly. Marriage or family therapy can also help you work out problems that the challenges of life with an Aspergers or HFA youngster are causing in your spousal relationship or with other family members.
• Support groups – Joining a support group is a great way to meet other families dealing with the same challenges you are. Moms and dads can share information, get advice, and lean on each other for emotional support. Just being around others who are in the same boat and sharing their experience can go a long way toward reducing the isolation many moms and dads feel after receiving a youngster’s diagnosis.
9. Know your youngster’s rights. As the parent of an Autistic youngster, you have a legal right to:
Be involved in developing your youngster’s IEP from start to finish.
Disagree with the school system’s recommendations.
Free or low-cost legal representation if you can’t come to an agreement with the school.
Invite anyone you want—from a relative to your youngster’s doctor—to be on the IEP team.
Request an IEP meeting at any time if you feel your youngster’s needs are not being met.
Seek an outside evaluation for your youngster.
10. Consider yourself a member of a very elite and interesting group of parents. Many leading figures in the fields of science, politics and the arts have achieved success because they had an autism spectrum disorder. Some of the characteristics linked to the disorder are the same as those associated with creative genius. One of the reasons for this could be the fact that the disorder creates people who are able to persist with one idea for huge periods of time - while those without the disorder would have long since moved on to another area of thought.
Explaining Asperger's or High-Functioning Autism to Your Recently Diagnosed Child
In keeping with this positive mind-set, please share the following message with your child or teenager:
There are aspects of Asperger and HFA that you can use to your great advantage. For example:
1. 3-Dimensional Thinking: Your ability to utilize 3-dimensional visioning gives you a unique perspective when designing and creating solutions.
2. Attention to Detail: Your ability to remember and process minute details without getting lost or overwhelmed gives you a distinct advantage when solving complex problems.
3. Cutting through the Smoke Screen: Your ability to recognize and speak the truth that is being "conveniently" ignored by others can be vital to the success of a project or endeavor.
4. Focus: Your ability to focus on one objective over long periods of time without becoming distracted allows you to accomplish large and challenging tasks.
5. Independent Thinking: Your willingness to consider unpopular or unusual possibilities generates new options and opportunities and can pave the way for others.
6. Internal Motivation: Rather than being swayed by social convention, other's opinions, social pressure or fears, you can hold firm to your own purpose. Your unique ideas can thrive, despite naysayers.
7. Logical Decision Making: Your ability to make logical and rational decisions and stick to your course of action without being swayed by impulse or emotional reactions allows you to navigate successfully through difficult situations without being pulled off-course.
8. Unique Global Insights: Your ability to find novel connections among multidisciplinary facts and ideas allows you to create new, coherent, and meaningful insight that others would not have reached without you.
More resources for parents of children and teens with High-Functioning Autism and Asperger's:
COMMENTS: • Anonymous said... Hugs to all you parents out there doing it rough. I am so glad my son has not been as severe with his symptoms of Aspergers. My heart aches for those of you struggling. Hang in there. • Anonymous said... I have had the same situation as the first commenter. I think that my Aspie son is not as extreme as he could be due to my management and him being homeschooled his whole life. Thankfully by the time I told his psychologist all the things he did when little he was able to see that my son is Aspie even if he doesn't show the usual symptoms of a 13 year old Aspie. I hope the first commenter is able to get help if it is needed. • Anonymous said... I loved reading this, I even passed it on to my aunt and husband. Now if I can just get the doctors to agree that my 13 is in fact an Aspie. Any advice on that one?? They said, oh no, I dont see that at all. I'm begining to think I managed well enough with him over the years to mask some of his presence with others. • Anonymous said... I really enjoyed reading this article. My seven year old son was just diagnosed with high functioning Aspergers/ADHD/anxiety. Unfortunately, my ex-husband (his dad) doesn't agree with the doctor or me because he doesn't act the same way at his house. Al they do there is play video games, which is what my son does when he "zones out" and needs to remove himself from all situations. When he comes home after being there, he usually a mess and has meltdown after meltdown. He goes to his dad's every other weekend. His dad also tortures him by making him do stuff that he knows will both him, like go to the movie theater. My aspie is terrified of the movie theater, and hides under his blankie the whole time he is there, and then his dad makes fun of him and calls him a "baby" and a "wimp." Any one got any suggestions? I also have six other kids that live full time with me (18, 16, 12, 9, 6, & 2) and I have a 7 year old step son that comes every other weekend (the weekend when my kids are home with me, so that make 8 kids at home that weekend). • Anonymous said... I have a twenty year old daughter that has never been diagnosed with Asperger’s Syndrome. However, after recently learning more about this disorder, I think she could very possibly have it. Some of the things that I see are as follows: poor personal hygiene doesn’t brush her teeth, wash her hair or take a bath without being reminded, doesn’t like change –never cuts her hair, sits at the same seat at table, wears the same clothes over and over, is a homebody-very few friends gets hung up on one thing and that’s all she wants to talk about has an extreme sense of smell. We are so frustrated with her. I am constantly getting after her, but it does no good. She feels like she is a victim. We took her to family counseling for a while, but It did no good. I don’t know what to do or where to go for help? I would like to have her tested, but I don’t know how to go about telling her or where to go? If you have any advise, it would greatly be appreciated. • Anonymous said... My 6 year old son has never been formally diagnosed with Aspergers but his class teachers agree with me, that he is definitely on the spectrum. He causes no problems at school - he knows how he should behave and the boundaries. He has meltdowns at home but the last few days have been exceptionally hard for me to cope with. He has been telling us that he is rubbish and ugly and we should kill him as he is no good. The worse thing, he means it, you can see it in his eyes. I want to get help for him, but my husband is reluctant- he thinks social services will be involved and doesn't want this to happen. • Anonymous said... My son did the same thing when he was about 4... His father said there was nothing wrong with him and refused to believe so... I went on my own to therapy apts, and joined a group that supported special needs. That was the best thing I ever did and his father now thanks me for it... At age 3 I knew something was wrong and the older he got the worse he was. So by age 4 I had to do something. Now he is 7 and you would hardly know he has aspergers. Many years of therapy and unconditional love and support helped me get thru the tough times. He is still in "group" and he has an attendent care person at school during certain transitions that upset him. He still has moments of where he mumbles stuff like your son but its much better now. Just because he has a disorder doesnt mean anything is wrong it just makes them more special. Social Services wouldn't be involved at all. You are just a parent worried about you child. My suggestion is to have your husband and son go to therapy. You really learn alot about how they feel and what you guys can do to help him. Hope this gives you some hope. • Anonymous said... My son is 13yrs has Aspergers/ADHD. He has been to three primary schools and now he does corresponds at home. He has learned that us his parents will rescue him from his behaviors as we have done when he was in the school system. He is not violent but manipulative, especially in public where if we try to discipline him he will say we are abusing him. He use to watch TV and act out what he saw believing this was how people acted from programmers such as The Simpsons and Family Guy, which we have banned him from watching. Now he acts like a sheep that he sees from our house and he will smile and bunt us. He has started doing this in public and talking to the sheep in public too. When he goes somewhere he doesn't want to be such on a day trip with Autism NZ holiday programmed he plays up and uses bad language, defiant, yells out to the public saying they are hurting him. He went for a test to see where he was with his learning and afterwards he acted like a mating sheep and used bad language. Please help me with some ideas. We got into a lot of trouble when he was in school as he would make things up and people believed him and now he is a teen I am worried where he is heading. • Anonymous said... My son is almost 14. He has been taking medication since he was 7 for a mood disorder - not otherwise specified. He has also been diagnosed with general anxiety disorder - not otherwise specified and OCD. He is about 75 pounds overweight due to the meds he has been on. He has extreme school anxiety....and he is cyclical. Falls into a terrible depression at the end of February and we typically increase his meds and he is ok til May. Then he dips down again. Last year, he did not get better until he tried to commit suicide in October. He is currently in 7th grade and a full time aide must follow him to direct his every move in regard to school work. He was in a partial hospitalization program in 5th grade because he refused to go to school. In sixth grade, he never went back after Memorial Day. This year (7th grade), he has not missed a day, but I think that it is because he has the aide. Next year, he will be in 8th grade. On a typical morning, I have to physically remove him from his bed and I never know if he is going to go or not. He has behavioral therapy twice a week for two hours a day. He cries any time he does not get his way. Very easily frustrated. • Anonymous said... The mention of 3-Dimensional Thinking is such a familiar concept. My 7 year old son was diagnosed with High Functioning Asperger's two months ago. I have said, for YEARS, that he speaks in three dimensions. He has always described events and scenes in mind-blowing detail, and that was the only way I could describe it. While there are certainly downsides to being on the spectrum, some of the characteristics are amazingly wonderful. • Anonymous said... you need to get the school to investigate him and do a CAF form do they have a SENCO? mine was fabulous, once he is diagnosed they will understand and assist him, its not a "label" its just a difference, a paeditrician can diagnose him as well x Please post your comment below…
“Do children with high functioning autism tend to have problems with speech and language? How can parents tell if their child has problems in this area, and what type of interventions are recommended?”
Language seems to develop on time in kids with Asperger’s (AS) and High-Functioning Autism (HFA), but words, while formulated according to the rules, seem to lack functional effectiveness, because they most often are used to express immediate needs or to expound on the youngster’s favorite subjects.
Young people with AS or HFA seem not to see the main idea or the pivotal point. They tend to have problems with abstraction, inference, or practical, functional language. Also, their semantic understanding is limited, which frequently shows up in tests and instructional measures of listening comprehension.
Instead of delaying language development, AS and HFA impairs the subtleties of social communication. These boys and girls have difficulty understanding nuances (e.g., irony, sarcasm, fanciful or metaphoric language, etc.), and many of them take language literally (e.g., expressions like “watching paint dry” or “smart as a tack” leave these kids very confused).
Young people with AS and HFA are often referred to as “little professors,” which is due to their stiff and often pedantic and monotonic use of language. The varied qualities of expressive language may be unusual, which is called prosody (i.e., the tempo, pitch, loudness, tonality, stress emphasis, and rhythm patterns of spoken language). AS and HFA speech patterns often seem odd to those who don’t know them. Tone, intonation and volume are often restricted, seemingly inappropriate, or appear at odds with what is being said.
These kids also have difficulty interpreting and displaying non-verbal communication. Body language, facial expressions, the use of personal space, gestures and postures are often mysteries to boys and girls on the autism spectrum. This inability to instinctively comprehend unspoken communication has led some experts to suggest Asperger’s is actually a non-verbal communication disorder.
How can parents tell if their AS or HFA child has language difficulties? We’ve provided a checklist below…
Characteristics Checklist for Asperger’s and HFA: Language Skills Deficits—
Attempts to control the language exchange, and may leave a conversation before it is concluded.
Creates jokes that make no sense.
Creates own words, using them with great pleasure in social situations.
Difficulty discriminating between relevant and irrelevant information.
Displays a delay when answering questions.
Displays difficulty analyzing and synthesizing information presented.
Displays difficulty as language moves from a literal to a more abstract level.
Displays difficulty sustaining attention and is easily distracted (e.g., one might be discussing plants, and the AS or HFA child will ask a question about another country — something said may have triggered this connection, or the child may still be in an earlier conversation).
Displays difficulty understanding not only individual words, but conversations and material read.
Displays difficulty with problem solving.
Displays difficulty with volume control (i.e., either too loud or too soft).
Does not ask for the meaning of an unknown word.
Does not inquire about others when conversing.
Does not make conversations reciprocal (i.e., has great difficulty with the back-and-forth aspect).
Engages in obsessive questioning or talking in one area.
Focuses conversations on one narrow topic – with too many details given.
Has a large vocabulary consisting mainly of nouns and verbs.
Has a voice pattern that is often described as robotic or as the “little professor.”
Has difficulty absorbing, analyzing, and then responding to information.
Has difficulty discriminating between fact and fantasy.
Has difficulty initiating, maintaining, and ending conversations with others.
Has difficulty maintaining the conversation topic.
Has difficulty understanding the meaning conveyed by others when they vary their pitch, rhythm, or tone.
Impairment in prosody (i.e., the pitch, stress, and rhythm of the voice).
Impairment in the pragmatic use of language (i.e., the inability to use language in a social sense as a way to interact and communicate with others).
Impairment in the processing of language (i.e., one’s ability to comprehend what has been said).
Impairment in the semantic use of language (i.e., understanding the language being used).
Interprets known words on a literal level (i.e., concrete thinking).
Interrupts others.
Is unable to make or understand jokes/teasing.
Is unsure how to ask for help/make requests/make comments.
Knows how to make a greeting, but has no idea how to continue the conversation (e.g., the next comment may be one that is totally irrelevant).
Lacks interest in the topics of others.
Makes comments that may embarrass others.
Moves from one seemingly unrelated topic to the next.
Once a discussion begins, it is as if there is no “stop” button (i.e., must complete a predetermined dialogue).
Processing of information is slow and easily interrupted by any environmental stimulation (i.e., difficulty with topic maintenance), which appears as distractibility or inattentiveness.
Rarely varies the pitch, stress, rhythm, or melody of his speech – and does not realize this can convey meaning.
Rhythm of speech is more adult-like than child-like.
Uses conversation to convey facts and information about special interests, rather than to convey thoughts, emotions, or feelings.
Uses language scripts or verbal rituals in conversation, often described as “nonsense talk” by others. Scripts may be made up or taken from movies, books or television programs (e.g., uses the voice of a movie or cartoon character conversationally and is unaware that this is inappropriate). At times, the scripts are subtle and may be difficult to detect.
Language Disorder—
Some children on the autism spectrum have a full-blown language disorder. Language disorder refers to problems with understanding the message coming from others (i.e., receptive language), and/or getting their meaning or message across to others (i.e., expressive language).
Language disorder is different than “delayed language.” With delayed language, the youngster develops speech and language in the same way as other kids, but later. In language disorder, speech and language do not develop normally. A youngster with language disorder may have any of the symptoms listed below:
difficulty finding the right words when talking, and often use placeholder words such as "um"
difficulty putting words together into sentences, or their sentences may be simple and short and the word order may be off
difficulty understanding what other people have said
have a vocabulary that is below the level of other kids the same age
leave words out of sentences when talking
problems following directions that are spoken to them
problems organizing their thoughts
use certain phrases over and over again, and repeat (echo) parts or all of questions
use tenses (past, present, future) improperly
Because of their language problems, AS and HFA kids often have difficulty in social settings.
Speech and language therapy is the best approach to treating this type of disorder. Psychological therapy (e.g., psychotherapy, counseling, or cognitive behavioral therapy) is also recommended because of the possibility of related emotional or behavioral problems. Moms and dads who are concerned that their youngster's speech or language is lacking should see their doctor. Ask about getting a referral to a speech and language therapist.
Many people believe that speech and language treatment can’t begin until a youngster starts talking. This is not true. Treatment can - and should - begin as soon as possible. Research shows that kids know a lot about language long before the first word is ever spoken. Your youngster’s treatment team might include a doctor, an audiologist, a speech-language pathologist, an occupational therapist, and/or a social worker.
In addition to speech and language therapy, there are a few things parents can do to assist early on in their child’s development. Here are some parenting tips for helping along your youngster’s language-skills acquisition:
Answer your youngster every time he speaks. This rewards him for talking.
Ask your youngster lots of questions.
Describe for your youngster what she is doing, feeling and hearing in the course of the day.
Don’t criticize grammar mistakes. Instead, just model good grammar.
Don’t try to force your youngster to speak.
Encourage storytelling and sharing information.
Expand on what your youngster says (e.g., if your youngster says, “fruit” …you can say, “Oh, so you want some fruit”).
Follow your youngster’s lead, so you are doing activities that hold his interest as you talk.
Have your youngster play with “typical” kids whose language may be more advanced.
Listen to your youngster. Look at her when she talks to you. Give her time to respond (it may feel like an eternity, but count to 10 before filling the silence).
Look at family photos and talk about them.
Make eye contact whenever you are conversing with your child (regardless of whether or not he/she is making eye contact with you).
Plan family trips and outings. Your new experiences give you something interesting to talk about before, during, and after the outing.
Play with your youngster one-on-one, and talk about the toys and games you are playing.
Read books aloud. Ask a librarian for books appropriate to your youngster’s age. If your child loses interest in the text, just talk about the pictures.
Sing to your youngster and provide them with music. Learning new songs helps your youngster learn new words, and uses memory skills, listening skills, and expression of ideas with words.
Talk a lot to your youngster. Tell them what you are doing as you do it.
Use gestures along with words.
When talking to your child, frequently vary the tempo, pitch, loudness, tonality, stress emphasis, and rhythm patterns of your voice.
Young people with AS and HFA can have problems with any - or all - of these aspects involved in producing or understanding speech and language. Especially, due to their deficits in appreciating social situations, they may not have any understanding of how others might respond to a communicated message.
These children frequently appear to have deficits in paying attention to auditory information. Thus, they frequently have to be ‘trained’ to pay attention to sounds. Even when they are paying attention, they often seem to have difficulty in decoding what sounds mean and in matching them to words or thoughts. In some children on the autism spectrum, this may be because they actually have difficulties with words and thoughts themselves.
Some children with AS and HFA have difficulties with articulation, often as part of a broader problem of difficulty with oral-motor functions (i.e., movements of the lips and tongue, and associated breath control). On the up-side, though, these children are frequently very good with paying attention and appreciating visual materials. Thus, the visual route is often the best way of getting access to their minds and giving them a way of expressing themselves, in turn. Question: Mark, thanks for the very comprehensive article. I work a lot with HFA adults, and I have yet to find a way to get speech therapy for them. Most speech therapists are mystified by adult autism, it seems. Any suggestions?
Answer: The best approach for these adults is to simply focus on the social aspects of communication (i.e., how to use language in a way that results in a desirable connection for both parties involved in the verbal exchange).
More resources for parents of children and teens with Asperger's and High-Functioning Autism:
Teens with Asperger’s (AS) and High Functioning Autism (HFA) bring their unique flavor to adolescence, essentially determined by the levels of three principles: avoidance, insight, and interest. Let's look at each in turn:
Level of avoidance— In the social development of AS and HFA teens who show some interest in peer interactions, social anxiety and resultant avoidance play an important role. Some of these teens get very nervous just with the thought of approaching others and may choose to avoid it at all costs. Their avoidance may appear as if they are not interested in others. It’s important to differentiate this since anxiety can be treated much more easily than genuine lack of interest.
Level of insight— Some teens with AS and HFA will not avoid interacting with others younger, older or similar age. Rather, they are eager to communicate, though, often in a clumsy “in-your-face” way. The level of their insight into their social deficit will then become the determining factor of their social success. If they are unaware of their shortcomings in gauging the social atmosphere and reading social cues, they may inadvertently come across as rude, insulting or boring. They may miss subtle criticism, sarcasm or teasing. As they develop better insight, they become more motivated to learn what had previously not come naturally and intuitively. They also have a better chance to work through a sense of loss.
Level of interest— Some teens with AS and HFA will show little or no interest in others. They may seem to be totally unaware of their friends’ presence, or they may appear indifferent when friends try to interact. As the symptoms of this disorder get less severe over time, the level of interest in developing friendships usually increases. For these “special needs” teens, the quality of social interactions mostly depends on the levels of avoidance and insight.
Regardless of the individual developmental route, most teens on the autism spectrum start realizing that they are not quite like others at some point during their teenage years. A few factors seem to facilitate the process: (a) a higher level of interest in others; (b) a higher level insight into difficulties in social interaction; and (c) a higher IQ.
Once the young person realizes that he has significant difficulties in conducting social relationships compared to his peers, he needs to deal with this loss. Understanding the thoughts, feelings and behavior of an adolescent on the spectrum is the necessary first step in helping him. Parents need to consider the following coping process that AS and HFA teens go through when dealing with their losses:
Denial (e.g., “I don’t have Asperger’s!”)
Anger (e.g., “Why do I have this stupid disorder – it’s not fair.”)
Bargaining (e.g., “Maybe there’s a cure or some medication I can take that will make it go away.”)
Depression (e.g., “I guess I really do have this disorder. I can’t seem to make friends like everybody else can. Nobody likes me.”)
Acceptance (e.g., “O.K. So I have this thing called Asperger’s – so what?! A lot of people have it. I don’t care what others think about me. If they don’t like me, that’s their problem.”)
Most commonly, the young person on the autism spectrum will not go through these stages one after another, but rather display a larger or smaller aspect of each at any given time. This is a painful process for both the teen and his parents. Moms and dads may find themselves trying to avoid addressing their teen’s painful circumstances. We are all tempted to avoid pain – and denial is an excellent painkiller. However, as much as denial is contagious, courage and strength are contagious as well. An AS or HFA teenager seeing his parents dealing with the hard issues calmly and rationally will be encouraged to talk about his anger and frustration. This will in turn help him get closer to acceptance.
Teenagers with Asperger's and High-Functioning Autism: Special Considerations for Parents
Tips for helping your Asperger’s or HFA teen to deal with his disorder:
1. You don’t have to bring up the subject of “spectrum disorders,” but if your teen does, give him a good listening ear – and be patient. Don’t try to change the subject unless he does so.
2. If your AS or HFA teen seems to be depressed, offer the option of counseling. Sometimes it’s easier to talk to a stranger. But try not to push the idea directly, even if you feel that your teen clearly needs professional help.
3. Don’t try to minimize your teen’s difficulties, but also don’t let him exaggerate. Provide gentle reality-testing.
4. Most teens with AS and HFA excel in one or two subjects. They tend to accumulate a lot of information on the subject and love to talk about it a lot. Unfortunately, at some point, parents (and siblings) end up losing interest and start getting bored with this “special interest.” Rather than avoiding the subject, try finding out new ways to engage your teen in the subject. Structure the topic in a different way. Find a way to challenge him. Be creative and let the sky be the limit! Your interest will make your teen feel better about himself, and realizing his mastery on the subject will boost his self-esteem.
5. Consider trying an antidepressant medication if your teen doesn’t seem to be able to move on. Look for the following common symptoms of clinical depression (if 5 or more of these are present week after week, you will need to take action):
Withdrawing himself from the rest of the family
Waking up in the middle of the night and having difficulty falling back to sleep
Refusing to participate in group activities
Putting himself down (e.g., saying he is “stupid”)
Not being able to fall asleep
Needing to take naps during the day
Making comments such as he hates life, he hates you, nobody loves him, or he wishes he were dead
Losing interest in activities he usually enjoys
Eating less - or more - than usual
Complaining that he is tired all the time
Blaming himself unfairly for anything that goes wrong
Becoming irritable and angry with the drop of a hat to the point where parents and siblings start walking on egg shells
Appearing sad for most of the time
6. Some teens with AS and HFA resolve their sense of loss by turning the issue upside down. That is, rather than clinging to depression and despair, they find their “identity” in their disorder. For example, they may (a) get in touch with other kids on the spectrum, (b) begin educating their peers about AS and HFA at school, (c) set up web sites, chat rooms, or even write books about the disorder, and (d) explore treatment options.
Encouraging your teen as he takes action in these ways may turn out to be the best antidepressant treatment ever. How can you encourage an AS or HFA teen to be proactive? Consider the following ideas:
Get in touch with organizations like Aspergers Society of America or Asperger Syndrome Coalition of the U.S., and contact their local chapters.
Leave brochures, leaflets and other information about teen groups around to catch the attention of your teenager.
Never get discouraged and keep trying, always letting your teen make the first move in showing interest.
Attend support groups for moms and dads of teenagers on the spectrum, and make acquaintances.
7. In contrast with their rather slow social development, teens on the autism spectrum develop physiologically and sexually at the same pace as their peers. As your “special needs” teen grows older and displays sexualized behavior, you may find yourself worrying. For example, worrying that: (a) your teen will get pregnant (if a daughter) or will impregnate someone else (if a son), (b) he will be taken advantage of, (c) he will contract sexually transmitted diseases, (d) he will not have the opportunity of enjoying sexual relationships, or (e) he will be misunderstood by others.
While some moms and dads get concerned that their AS or HFA teens show no interest in sexual matters, others have to deal with behaviors such as touching private parts in public, touching others inappropriately, talking about inappropriate subjects, stripping in public, staring at others inappropriately, or masturbating in public. To address these concerns, consider the following tips:
Rather than making a few comments about sexuality after an issue becomes problematic (e.g., right after an incident when everybody feels quite emotional about what has just happened), set up a time with your teen to talk about sexuality.
Talk about “normal” behavior as it relates to adolescent sexuality, then begin to set realistic - but firm - limits about inappropriate behavior. Seeing your level of comfort around this sensitive topic, your teen will get the message that it’s OK to have sexual feelings – and it’s OK to talk about them. Getting this message alone will bring the tension around sexuality down a few notches.
Ask about your teen’s desires and worries. Ask direct questions about what he already knows about sex.
Don’t be shy about asking for help. Consulting other moms and dads with teens on the spectrum is a good starting point. Your teen’s school may also be able to help. You can also inquire about professional help, which should provide (a) behavioral modification techniques to discourage inappropriate sexual behavior and promote appropriate sexual behavior, (b) sex education based on your teen’s specific needs, and (c) an individualized sexuality assessment.
The key is addressing these issues – not avoiding them.
Hormonal changes, self-identity, and the pressure of being socially acceptable are just a few of the challenges that adolescents have to face. If you add AS or HFA to the equation, then you really have your work cut-out for you as a parent. You can help your “special needs” child, but this begins with becoming knowledgeable about what he must face as a teenager. Learn as much about the disorder as possible and how you can support and help him face his unique challenges during this time.
Resources for parents of children and teens on the autism spectrum:
• Anonymous said... OT can help... Parents just got to know to find the right ones. My OT private practice company has been trying to target adolescents and young adults like this- but nobody really knows because OT is not recognized as a MH provider in the US and the fact that it is done via telehealth. Parents need to know such options EXIST- as OT is not just about sensory integration or handwriting. If parents want to know more, message me. It's such an oxymoron that services do exist, but parents have little or no idea where to look for it. That is why I (as an OT and a self advocate) am trying to educate the autism community about what OT can do beyond what you might know from other parents or advocates. Bottom line- I want to make a difference for the autism community in this regard. I just want parents and other autistic individuals to give me a chance to make an impact. It's going to be a win-win for the autism community... Your teens and young adults get high quality care and you are supporting a fellow self advocate's advocacy efforts to the OT community about autism. Not that I couldn't make an impact at a clinic based job, but supporting my private practice will allow me to make a bigger impact. • Anonymous said... I've homeschooled my daughter since she was 13 and compared to when she was younger she is now a joy and easy to parent. We no longer have school related social anxiety and meltdowns. She attends after school clubs and home school get togethers and has made a selection of good friends for the first time in her life. She has a maturity and understanding of things beyond her years and can choose who to share her HFA with and who not. She can find NT girls aobssions with peer conformity amusing or annoying but now has the confidence to be true to herself. She is focused on knowing her limits and finding a place in the world with employment she will cope with and find fulfilling. She has never slept but now is old enough to leave. Compared to my firends and neighbours with NT girls I have no fears concerning alcohol, drugs, underage sex or unwanted pregnancies, and very little in the way of opposition or defiance. * Anonymous said... My daughter has been lucky enough to bond with other children on the spectrum in her class. They have formed a peer group that has slowly grown since 6th grade (she is now in 10th) I think the fact that they understand each other and some are better at social skills has really helped them all.
“Is there a link between GI problems and high-functioning autism? Our son has frequent constipation, and we’re wondering if this has something to do with the disorder.”
Gastrointestinal (GI) disorders do occur in some children with High-Functioning Autism (HFA) and Asperger’s (e.g., chronic constipation, diarrhea, irritable and inflammatory bowel conditions). However, the link between GI issues and autism is up for debate.
One study from the Mayo Clinic found no apparent overall link between the two, although the researchers did find that some individual GI problems are more common in kids on the autism spectrum as compared to their “typical” (i.e., non-autistic) peers.
The Centers for Disease Control and Prevention (CDC) reports that kids on the autism spectrum are 3.5 times more likely to experience chronic diarrhea or constipation than their typical peers. Some researchers propose that toxins produced by abnormal gut bacteria may trigger or worsen the symptoms associated with the disorder.
Furthermore, researchers report that the GI activity of some young people on the spectrum differs from that of typical children in two major ways: 1) their intestines are home to abnormal amounts of certain digestive bacteria, and 2) their intestinal cells show abnormalities in how they break down and transport carbohydrates. In addition, it has been suggested that some of these children have abnormal levels of certain bacteria. Bacteria play an important role in normal digestion, and abnormal levels have been associated with intestinal inflammation and digestive problems.
We also know that alterations in how intestinal cells break down carbohydrates can affect the amount and type of nutrients that these cells offer to intestinal bacteria. Such alterations may negatively impact the makeup of the intestine’s normal community of digestive bacteria. These findings may explain why some parents of kids on the autism spectrum report that special diets and probiotics improve both their child’s digestion and his or her behavior.
Treating GI Disorders in Kids on the Autism Spectrum—
1. Gastroesophageal reflux disease (GERD): Behavioral modifications include avoiding food near bedtime, eating smaller meals, avoiding foods that tend to trigger symptoms, and elevating the head during sleep. Also, medications can be implemented (e.g., antacids, Pepcid, Zantac, Nexium, Priolosec).
2. Chronic diarrhea: Treatment will depend on the cause. For example, if diarrhea is due to food allergies, lactose intolerance or celiac disease, it’s usually treated with dietary restrictions. Also, medications may be warranted in certain circumstances.
3. Chronic constipation: This condition is often addressed using behavioral management, which includes dietary changes (e.g., increasing fiber, eliminating constipating foods), and management of toileting behaviors (e.g., teaching a child to sit on the toilet after meals). In addition, supplements can be used to alleviate constipation (e.g., soluble fiber, laxatives such as mineral oil, magnesium hydroxide or sorbitol).
4. Casein- and gluten-free diets: Many moms and dads of kids on the spectrum report that behavior improves when their youngster eats a diet free of the proteins gluten (found mostly in wheat, barley and rye) and casein (found in dairy products).
5. Probiotics: In addition to eliminating casein and gluten from their child’s diet, many parents have reported that probiotics (i.e., the "good" bacteria) help lessen gastrointestinal distress.
How Parents Can Help—
You may want to consider consulting with a dietary counselor (e.g., a nutritionist or dietician). If so, bring the counselor a 3 - 5 day “dietary history” by writing down what was eaten and how much. The counselor will review the history to determine whether there is a risk for nutritional deficiency. He or she can then work with you to add foods or supplements that address potential gaps in nutrition.
In addition to providing a history of what was eaten and how much, create a list of the specific symptoms and behaviors that you would like to work on (e.g., your child’s tantrums, meltdowns, shutdowns, inability to sit quietly during class, problems sleeping at night, etc.).
Recruit the assistance of teachers, babysitters, and others outside the family to help you accurately monitor targeted symptoms and behaviors – and verify your awareness of changes. If a consensus is reached that improvements are indeed occurring, then continuing the dietary changes will be worth the cost and effort.
Note that improvements may be due to the removal of just one of the aforementioned proteins (i.e., gluten or casein) from the diet. Some parents report improvement with a gluten-free diet alone, while others report improvements with just a casein-free diet. In addition, improvement may be due to dietary changes other than the removal of casein or gluten (e.g., the new diet replaces processed foods high in sugar and fat with healthier foods like fruits and vegetables).
Also note that a strict casein-gluten free diet requires hard work and can be costly (e.g., parents will be faced with the task of sending or bringing special meals and treats whenever their child eats away from home, it may be difficult to eat from the menus in a restaurant or school cafeteria, birthday parties may present a challenge, etc.).
