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Your Child on the Autism Spectrum: What the Future Holds

*** Prognosis ***

There is some evidence that kids with High-Functioning Autism (HFA) may see a lessening of symptoms as they mature. Up to 20% of kids may no longer meet the diagnostic criteria as grown-ups, although social and communication difficulties may persist.

People with HFA appear to have normal life expectancy, but have an increased prevalence of comorbid psychiatric conditions (e.g., major depressive disorder, anxiety disorder) that may significantly affect prognosis.

Although social impairment is life-long, the outcome is generally more positive than for people with lower functioning autism spectrum disorders. For example, autism spectrum disorders (ASD) symptoms are more likely to diminish with time in kids on the high functioning end of autism. 
 
Although most students with the disorder have average mathematical ability and test slightly worse in mathematics than in general intelligence, some are gifted in mathematics. HFA has not prevented some grown-ups from major accomplishments such as winning the Nobel Prize.

Kids on the spectrum may require special education services because of their social and behavioral difficulties, although many attend regular education classes. Teens with the disorder may exhibit ongoing difficulty with self care, organization and disturbances in social and romantic relationships. Despite high cognitive potential, most young adults with HFA remain at home, although some do marry and work independently.

Anxiety may stem from (a) preoccupation over possible violations of routines and rituals, (b) being placed in a situation without a clear schedule or expectations, or (c) concern with failing in social encounters. The resulting stress may manifest as inattention, withdrawal, reliance on obsessions, hyperactivity, or aggressive or oppositional behavior.

Depression is often the result of (a) chronic frustration from repeated failure to engage others socially, and (b) mood disorders requiring treatment may develop. Clinical experience suggests the rate of suicide may be higher among teens on the autism spectrum, but this has not been confirmed by systematic empirical studies.

Education of families is critical in developing strategies for understanding strengths and weaknesses. Helping the family to cope improves outcomes in these young people. Prognosis may be improved by diagnosis at a younger age that allows for early interventions, while interventions in adulthood are valuable, but less beneficial.

As one parent stated, "I keep telling my 7 year old that things may be more difficult for him than other kids but he is smarter than his brain (the best way i can describe it at his age) and that he can train his brain to over come most any obstacle. i truly believe that this is possible with a lot of hard work."
 
 


 
More resources for parents of children and teens on the autism spectrum:
 
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Kids on the Autism Spectrum and Amusement Parks: Avoiding Over-Stimulation

Amusement parks and recreational theme parks can quickly propel the high-functioning autistic (HFA) or Asperger's youngster into total overload if you, the parent, are not careful.

Your youngster may have enthusiastically anticipated the trip, but no youngster deliberately seeks the public embarrassment and humiliation of a meltdown near the exit to the roller-coaster ride because of improper planning or pacing. This “behavioral” communication (i.e., meltdown) is a last resort when all else has failed.

Going to the Amusement Park: 25 Tips for Parents—

1. At first, start slow with gentle rides, paying careful attention for signs of over-stimulation.

2. After each ride, process the experience with your youngster to gather his impressions and tolerance level. Some children absolutely relish the sensory feedback they derive from seemingly violent, whirling, spinning, upside-down-turning rides – but some don’t, and after the ride is over, they may flip into a full-blown meltdown.

3. Allow your youngster to record the highlights of your activities with a camcorder, with your youngster directing the “movie” and providing the narration, of course.

4. Appoint your youngster the responsibility of taking photographs to share with family and friends. Disposable cameras make this easy and inexpensive, even if you are also using a camera of your own.

5. At some point during the day, know that your child may need the total solitude offered by a nap or reading time in the hotel room.

6. Be aware that many amusement rides feature flashing and spinning lights that may vary in intensity or kick up in intensity once the ride starts. The concern here is that this constant “strobe light” flickering may induce a meltdown in those kids who are overly-sensitive to visual stimuli.

7. Before arriving at the park, play visual memory games about the surroundings, review the day's written agenda, and discuss what you anticipate may be experienced on the rides.

8. Consider museums. Museum may provide a calmer, slower-paced atmosphere that your youngster may find conducive to becoming absorbed in the subject matter.

9. Consider purchasing an “easy pass” or “fast pass” offered for some attractions. Learn about the rules and premium costs involved to access such a system. The passes may be available only at certain times for certain rides, which may cause you and your youngster to rearrange your schedule.

10. Create a “schedule-of-events” with your youngster before arriving at the park.

11. Engage your youngster in assisting you to prepare for attending a theme park by researching all the details (e.g., how far, mode of travel, where to stay, how much, etc.).

12. Ensure that your HFA or Asperger's youngster is clear in understanding the written rules about the ride (e.g., keeping arms and hands inside, staying seated, etc.).

13. Have a quiet lunch somewhere in order to give your child a break from the environmental stimuli (e.g., noise, congestion, etc.).

14. If the theme park is located in an area with other “spin-off” type activities and amusements on a smaller scale, consider attending one of those instead of the park.

15. If there is a way to link any of the theme park activities to one of your youngster's passions, do it! For example, if your youngster is interested in monkeys, then the nearest zoo might be a better option over some other attraction.

16. If you feel anxious about how you would feel riding a certain ride, it's probably a good measuring tool to deny your youngster admittance. As a guide, many amusement parks offer brochures that are coded to indicate appropriate age levels.

17. If your youngster becomes easily distracted by noise — especially unpredictable noises like train whistles, buzzers and bells, or other loud sounds emanating from rides — wearing an iPod and listening to favorite music will be a good survival tool.

18. In addition to scheduling downtime, it may be best to pace the sequence of activities (e.g., riding a roller coaster followed by attending the dolphin show, then on to an exhibit display before tackling another fast-paced ride).

19. Know that riding certain rides can look tempting and exciting — until you're a passenger!!! Take the time to carefully observe any ride you are considering with your youngster prior to boarding. The thrill of most amusement rides is based on surprise, fear, and strong centrifugal force. The extreme emotional and physical stimulation may be too much for your youngster to endure.

20. Make sure that your youngster (a) is hydrated with cold drinks throughout the day, (b) wears sun-block (and a hat, if tolerated), and (c) stays as comfortable as possible while waiting in very warm conditions. He may not know to express his growing discomfort or may be oblivious to it entirely.

21. Many theme parks offer a faster, alternate line for children with disabilities to quickly board rides and other amusements. Selecting this alternative may be ‘stigmatizing’ for your youngster, however many moms and dads with kids on the spectrum swear by this convenience.

22. Stick to the schedule to the very best of your ability and pay attention to your youngster for any signs that the vacation is wearing thin on him, which he may not be communicating.

23. Theme parks are notorious for large crowds and long lines. You know your youngster best and have a sense of his endurance and tolerance thresholds. Build in breaks and downtime throughout the day.

24. Waiting in line can be a frustrating exercise in patience for many children. The HFA youngster may not immediately understand why it's necessary to wait in line. It may be helpful to prepare a written story, in advance of the trip, to review with your youngster before and during long waits in line (include details about what to do and how to conduct oneself while waiting).

25. Weigh whether you think an amusement park vacation is appropriate for your youngster in the context of your family makeup.

==> Preventing Meltdowns and Tantrums in Kids on the Autism Spectrum
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Kids on the Autism Spectrum Who Spoil the Family Vacation: Tips for Parents

 "We're planning a family vacation [spring break] for the end of March. Past vacations have been super stressful due to our child's  tantrums and meltdowns (he has high functioning autism). His behavior turns what would be a very relaxing time into ...honestly, pure hell. We're almost glad to get back home so our son can get back into his usual routine (i.e., comfort zone). Any tips on how to make this next trip less of a headache?"

Some parents find it hard enough to venture out to the grocery store with a high-functioning autistic (HFA) youngster, much less go on a week-long vacation. Like most things, it takes a little planning and preparation. A youngster on the spectrum tends to react much better when he knows what to expect.

Even “neurotypical” kids (i.e., children without the disorder) tend to become irritable and frustrated in constantly changing environments, crowds, and loud noise – but for the HFA youngster, these things are magnified and can frustrate him to the point of boiling-over.

Grown-ups with the disorder tend to become withdrawn when they are over-stimulated or stressed, but HFA kids tend to externalize their stress, which often leads to a meltdown. As a parent of a youngster on the autism spectrum, you will face unique challenges when you break his normal routine. 
 

Trying the strategies below can make vacations easier for both you and your son:

1. Always travel with comfort food and toys. “Toys” is a broad ranging term, meaning anything from stuffed animals for your youngster to an iPod for your husband.

2. Prepare to be flexible. Even the best laid plans can go awry, especially with an HFA child as part of the group. You were going to have a great family reunion, and then your youngster had a meltdown. That's ok! Just tell the family "Randy isn't feeling well, and we'll need to take off early." Head back to Hotel, put on a video, and kick back. After all, it's your vacation, right?

3. Bring your routine along. As much as possible, attempt to stick to your youngster's normal home routine while you are away. When you must break the routine, make sure to prepare your youngster in advance for what is to come.

4. Check into the all the possibilities. You may have decided against Disneyland based on noise level or food issues. But think again. Disneyland, like many destinations, offers a variety of options for different kinds of visitors. Before you decide that a place will not suit your family, ask about special services and amenities. Research the options and find services that suit your special needs.

5. Choose "off" times for fun. Most children on the spectrum do better with quiet, low-key experiences. If it is summer and you're at the beach, hit the waves early or late in the day or year. If you're considering a theme park, wait until fall or early spring. Early Sunday morning is a great time to explore popular museums.

6. Choose your destination wisely. As you plan your vacation, choose a place that is as calm and quiet as possible. You can find plenty of quieter options that are still lots of fun (e.g., a lake) that take into account your desire for something new and different and your youngster's dislike for noisy, chaotic environments.

7. Chances are that, sometime during your vacation, you'll run into someone who will make a judgmental comment about you, your family, and your child. That someone should not be allowed to spoil your vacation. Be prepared to ignore rude comments and move on to the next activity.

8. Have a plan. Before going on vacation, think about what you will be doing and plan some activities that you know your youngster is comfortable with and will enjoy.

9. Keep it simple. Don't plan too much for any one day, and remember that this is vacation. Try not to make plans that can't be changed if your child has a tough day.

10. Keep your sense of humor throughout the trip.
 

11. Look for special hotel accommodations. When selecting a hotel, think about what special amenities (e.g., an in-room refrigerator and dining area) might make your youngster more comfortable. Be sure to put in your requests in advance at the time of your booking.

12. Make a memory. Take pictures of the event and work with your youngster to make a book of pictures that can help your youngster remember the things that you did.

13. Pack familiar things. Bring some familiar things from home, such as favorite bedding or a personal DVD player, to make your youngster more comfortable.

14. Bring earplugs and snacks for plane trips, music and picnic food for car trips, and portable music and video for all long-distance travel.

15. Practice beforehand. In the days and weeks leading up to the event, use role-play and rehearsal to let your youngster practice and learn how to deal with the upcoming social situations.

16. Tools like visual planners and social stories can make all the difference to your youngster's experience. If you're going back to a place you've been before, make a memory book from last year's photos. If not, use the Web to find images from Google or tourism websites. You can also create a personalized "social story," describing the whats, wheres, whos and whens of your planned vacation.

17. Relax. If you are stressed, your youngster will sense it. So stay calm and relax as much as possible so that you can enjoy yourself and decrease your youngster's anxiety.

18. Structure your days. It's true that vacations are supposed to be opportunities to kick back and take things as they come. For a child with HFA, however, unplanned time can be extremely stressful. That doesn't mean a planned activity for every hour of the day, but it does mean a daily structure.

19. Travel during less-crowded times. Instead of taking a flight at the same time everyone else does, book an off day or during low season to reduce stress and receive more attention and service.

20. Consider shorter vacations. Rather than going on the traditional week-long excursion, consider a “weekend get-away” or a 4-day trip. Why go away for 7 days if the last 3 days are going to be pure hell.

It may not be effortless to enjoy a vacation when your youngster has an autism spectrum , but with some planning and adjustments, you can make these occasions memorable events that your whole family can enjoy.


COMMENTS:

•    Anonymous said... Can you get a disability pass from Disney for a child with ADHD and Aspergers? I doubt my son will tolerate the lines so, I was hoping to get a pass to cut the time down.
•    Anonymous said... I learned last year onour trip to Universal that my boys need to know what is going to happen on amusement park rides to help with their anxieties about them. We are planning a trip to Disney next year and I plan on researching the rides beforehand. I want to have detailed descriptions of them so that my sons can look over them so they will have an idea of what is coming.
•    Anonymous said... I've learned I have to tell my son ahead of time before we go anywhere. He needs to know where we are going and why. I also try to give him an estimate of how long it should take. Giving him something to do like "can you put the items in the cart when we find them" is another good thing to keep his mind on a task instead of just dreading his walking way through a store for 20 minutes.
•    Anonymous said... We are wanting to go camping this summer, so we are preparing our son by going on short outings to where we want to camp, and making each trip there a little longer. We are also finding out what we will need to bring for him as entertainment as well, with each trip we take we learn more Hope you all have a wonderful summer!

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Trouble-Shooting for Defiant Behavior in Autistic Teens

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Children on the Autism Spectrum: How Parents Can Provide Communication-Skills Training

If you have a child with High-Functioning Autism (HFA), one of his or her greatest challenges is in the area of communication...

As a parent, you will want to (a) communicate in ways that will support your youngster's ease of understanding, and (b) discover how best to assist your youngster in deciphering communication in everyday conversation. Your youngster wants to be socially accepted by his peers and others, and your efforts to foster a mutual comfort level where communication is concerned will be critical in achieving this goal.

How to help your child develop communications skills:

1. Accept your youngster's (a) “ballpark” approximation of direct eye contact if he stares at your ears, mouth, or some area of your face other than your eyes while you are talking, (b) his need to look away from your eyes in order to formulate a thoughtful, articulate response, and (c) his need to make fleeting eye contact, look away, and then look back.

2. Allow for process time in between steps of instruction. After you've finished talking, give your youngster a chance to ask clarifying questions. Also, ask your youngster if he's ready for more information before going on to the next piece of instruction.

3. Allow your child to make liberal use of the computer. Computers are a tremendous benefit to kids with HFA. The computer is liberating because your youngster is free from social pressures with regard to immediacy of response, body language, facial expressions, personal space issues, and eye contact in conversation.

4. As part of “communication-skills training,” request your youngster to model his recall of others' body language and facial expressions, or model them yourself and ask, “Is this what you saw?”

5. Be cautious about over-loading your youngster with too much information all in one shot. As your youngster's mother or father, you will be able to best gauge how much or how little your youngster can absorb at once.
 

6. Because your youngster will probably interpret others' communications in a very literal sense, he will expect you to do the same. So in communicating with your youngster, do what you say you're going to do by keeping your promises — you'll be held to it!

7. Before giving your youngster instruction, ask him to prepare to make pictures or movies of what you're conveying. Check back on this during your communication by saying something like, “Can you see it?” or “Do you see what that's supposed to look like?”

8. Counsel your youngster in the nuances of neurotypical (i.e., non-autistic) behavior, especially as he enters his teen years (a time when children rely less on their moms and dads and interact with greater social freedom).

9. Develop a written list of key phrases that your youngster can use as a socially acceptable entry into conversation (e.g., “Hey, what's up?” … “What's new with you?” … “What did you do over the weekend?” … “What did you watch on TV last night?”).

10. Ensure your youngster's understanding of what you've communicated by asking him to describe what you've just said.

11. For your youngster, getting the “hang of” people may just come harder and require more effort to understand. The goal isn't one of mastery, but of knowing just enough to get by and be okay.

12. If you must break a promise, apologize to your youngster as soon as possible and let him know precisely when you will fix the situation or make it right.

13. If your youngster tends to have a flat affect, you may be unable to tell through body language or facial expressions if he understands what you have said — even if he says he does.

14. Know that your youngster may be challenged when interacting with peers and others because he: (a) doesn't understand how to maintain personal space, (b) has difficulty understanding the rhythmic flow (i.e., “give and take”) of conversation, (c) has trouble deciphering people's body language, (d) is brutally direct and honest, which may be offensive to others, and (e) talks off topic or interjects information that doesn't fit the moment.

15. Many kids with HFA will not be as successful as they could be when given instruction if they are required to make direct eye contact while you deliver your instruction. Many moms and dads demand direct eye contact from their neurotypical kids by saying something like, “Look at me when I'm talking to you!” But for the youngster on the autism spectrum, NOT making eye contact will help him retain information much better. The youngster with HFA who appears not to be listening may be taking in all – or nearly all – of what you are saying, as opposed to the youngster who is compelled to make direct eye contact to “prove” he is paying attention.

16. Most kids on the spectrum are visual thinkers (i.e., they think in constant streams of images and life-event “memory” movies). This way of thinking is a flowing, seamless, and natural manner of thought for many of these children.

17. Reinforce that it is always considered acceptable to politely request that someone repeat what they've said, or ask for clarification by simply stating, “I don't know what you mean. Can you please say it another way?”

18. Slow down and carefully measure the amount of information you dispense to your child in order to avoid confusion. If your youngster is unable to visualize what you verbally communicate, he is less likely to retain it.

19. Slow the pace of your instruction — especially if it's about something new and different. Also, rethink what you intend to communicate. Can it be simplified?
 

20. Sometimes you will want to simply abandon all expectations of trying to understand what just happened in favor of providing a gentle hug or allowing your youngster to have a good cry or personal space to temporarily shut down. These “unspoken” communications may have as much, if not more, impact than your verbal communications in the moment.

21. The youngster with an autism spectrum disorder says what he means and means what he says (e.g., ‘no’ means ‘no’ and ‘yes’ means ‘yes’). Your youngster's anxiety and frustration will likely escalate if you repeatedly ask the same question or ask him to change his mind without explanation.

22. Your child’s idea of communication to others, or expressive language, may be skewed from what is considered the norm. Try “debriefing” social situations that were confusing or upsetting to your child by privately, gently, and respectfully deconstructing them portion by portion.

23. Try reaching your youngster with pressing questions and concerns by sending him an email (you may get a reply that will surprise and enlighten your own understanding of the situation at hand).

24. Try videoing at family gatherings, picnics, parties, while playing games, or some other activity, and then use the video as “communication-skills training” to deconstruct your child’s social interactions (do this as naturally as possible; if your youngster knows you are singling him out, he may “overact” and play to the camera).

25. Know that your youngster may be quite challenged in his ability to process receptive language (i.e., understanding what others are communicating). You may be frustrated by his apparent unawareness of the social repercussions of interrupting or saying something with brutal directness.

More resources for parents of children and teens on the autism spectrum:
 
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2024 Statistics of Autism in Chinese Children

Autism Spectrum Disorder (ASD) has emerged as a significant public health concern worldwide, and China is no exception. As of 2024, new rese...