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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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Special Considerations When Disciplining Your Child on the Autism Spectrum

"I hate Hate HATE that I run low on patience with my child (high functioning autistic)! I'm trying to be more patient every moment of every day. In my heart I wouldn't change a single thing about him. He didn't do anything to deserve having an autism spectrum disorder. Sometimes it just seems so unfair. In any event, how can I discipline him in a way that's effective such that (a) we don't have to keep trying to solve the same problem over and over again, and (b) I don't lose my patience with his slow progress? ~ Signed, bad dad :( "

Most of us as parents of kids with high-functioning autism (HFA) and Asperger's have been so annoyed and frustrated by certain events that we lost our temper - and our sanity (for a moment).

Teaching and correcting a youngster on the autism spectrum requires balancing a number of considerations. As a father, you have the right to set the same rules as you would for any of your other kids. But you also have the responsibility to ensure you are being fair in communicating your boundaries so you can expect your HFA youngster's compliance. To discipline fairly, you will need to first know that you have communicated fully your rules in ways your youngster understands best.
 

Disciplining Kids on the Autism Spectrum:

1. A list of rules should become your youngster's property and, depending upon the situation, should be kept in his pocket for ready reference.

2. Be cautious about going to extremes. You have every reason to be a strong advocate on behalf of your youngster and in protection of his rights, but this does not exempt him from being disciplined by you, the parent.

3. Because your youngster is inherently gentle and sensitive, he may be particularly prone to being vulnerable (i.e., he may be more susceptible than neurotypical children to experiencing problems in communication and social interaction).

4. Before you discipline, be mindful that your youngster's logic will not necessarily reflect your idea of common sense.

5. Disciplining your youngster should be a teaching and learning opportunity about making choices and decisions. When your youngster makes mistakes, assure him that he is still loved and valued.

6. Don’t assume your son will understand appropriate social behavior under a wide variety of specific circumstances and, when that doesn't occur, discipline in the moment.

7. Look for small opportunities to deliberately allow your youngster to make mistakes for which you can set aside “discipline-teaching” time. It will be a learning process for you and your youngster.
 

8. Never assume your youngster will automatically transfer and apply information previously learned in one environment to a new situation that, in your mind, is remarkably similar. For the child on the spectrum, a new situation is a new situation.

9. Some moms and dads can become over-protective of their HFA child (i.e., the youngster gains more and more control while being protected in a sheltered environment with little to no discipline). They may make frequent excuses for their youngster's words or actions, and they may not discipline where most others agree it to be warranted. Don’t make this mistake!

10. Understand that your son (a) needs to feel safe, comfortable and in control, (b) will become unhinged by anything significantly unpredictable, (c) is doing the very best he knows how to in the moment with what he's got available to him, and (d) has good reasons for doing what he's doing.

11. You have the responsibility to be fair in how you communicate rules and expectations. Because your youngster will be most open to receiving this information in ways that are literal and concrete, this means making it tangible (e.g., put it in writing as a simple, bullet-point list).

12. Your approach to discipline should mostly be one of prevention – not intervention.

13. Your youngster may take personally criticisms you think mild or trivial. If you are a parent short on patience and prone to critical or sarcastic comments, be prepared for your youngster to withdraw from you more and more until you are shut out completely.

14. Your son's diagnosis is a label that describes a small piece of who he is as a human being. Your youngster is many other things. His diagnosis does not exclusively define him.

15. Your youngster's need to feel in control should not be taken to extremes. Moms and dads must set limits and expectations for all kids. Having HFA does not give one free rein to be out of control, and that should not be endorsed or indulged by you, the parent.

In order to effectively discipline the child on the spectrum, you will need to comprehend each of the factors above and fully place them in the proper context of any given situation. This knowledge will aid you in laying a foundation for “prevention” (rather than having to switch to “intervention”).

 
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Children on the Autism Spectrum Who Suffer with Encopresis

Question

I have my 12 yr old Grandson living with my husband and I, It isn't easy because his mother had to leave him with us for awhile. We are implementing your assignments in your book, it hasn't been easy but we are making significant headway. One thing that bothers us more than his behavior is him soiling his pants. I don’t know why and I have tried asking him why he does but all he says is he doesn`t know. I know that maybe he doesn`t know why but it is hard for my husband to understand how he can let it sit in his pants without a care. When my husband addresses this with my grandson he is confronted with a complete shutdown, he won`t look at him, answer him. I understand why he does but when I approach him on it, I will ask if he soiled his pants his first reaction is to tell me no he did not do it. Then I ask to check his pants, when I do I can see it and at that point I calmly ask him to get some clean clothes go to the bathroom have a shower and I make him clean out his shorts. He does this almost every day and when we noticed he didn`t do it that one day we praise him to no end. I don`t know what I can do to help him stop or why it happens in the first place. I would appreciate any comments as to how I can help him get over this. My grandson isn`t the easiest to handle when he gets to upset he is 12 at 6` tall and 230lbs so having an easy approach would be greatly appreciated.


Answer

Some High-Functioning Autistic children beyond the age of toilet-training who frequently soil their underwear have a condition known as encopresis. They have a problem with their bowels that dulls the normal urge to go to the bathroom, and they can't control the accidents that typically follow. Problems with encopresis and constipation account for more than 25% of all visits to doctors who specialize in disorders of the stomach and intestines.

Most encopresis cases (90% +) are due to functional constipation (i.e., constipation that has no medical cause). The stool (or bowel movement) is hard, dry, and difficult to pass when the youngster is constipated. Many children "hold" their bowel movements to avoid the pain of constipation, which sets the stage for having an accident. Moms and dads are often frustrated by the fact that their youngster seems unfazed by these accidents, which occur mostly during waking hours.

Denial may be one reason for the youngster's indifference. He/she just can't face the shame and guilt associated with the condition (some even try to hide their soiled underpants from their moms and dads). Another reason may be more scientific: Because the brain eventually gets used to the smell of feces and the youngster may no longer notice the odor.

Well-intentioned advice from moms and dads isn't always helpful because many parents mistakenly believe that encopresis is a behavioral issue. Frustrated moms and dads and caregivers may advocate various punishments and consequences for the soiling, which only leaves the youngster feeling even more humiliated. Up to 20% of children with encopresis experience feelings of low self-esteem that require the intervention of a psychologist or counselor. Punishing or humiliating a youngster with encopresis will only make matters worse. Instead, talk to your doctor. He/she can help you and your youngster through this treatable problem.

As the colon is stretched by the buildup of stool, the nerves' ability to signal to the brain that it's time for a bowel movement is diminished. If untreated, not only will the soiling get worse, but children with encopresis may lose their appetites or complain of stomach pain. Most cases of encopresis can be managed by your doctor, but if initial efforts fail, you may be referred to a gastroenterologist.

Treatment is done in three phases:
  1. The first phase involves emptying the colon of hard, retained stool. Different doctors might have different ways of helping children with encopresis. Depending on the youngster's age and other factors, the doctor may recommend medicines, including a stool softener (such as mineral oil), laxatives, and/or enemas. As unpleasant as this first step sounds, it's necessary to clean out the bowels to successfully treat the constipation and end your youngster's soiling.
  2. After the large intestine has been emptied, the doctor will help the youngster begin having regular bowel movements with the aid of stool-softening agents, most of which aren't habit-forming. At this point, it's important to continue using the stool softener to give the bowels a chance to shrink back to normal size (the muscles of the intestines have been stretched out, so they need time to be toned without the stool piling up again).
  3. As regular bowel movements become established, your doctor will reduce the youngster's use of stool softeners.

Keep in mind that relapses are normal, so don't get discouraged if your youngster occasionally becomes constipated again or soils his/her pants during treatment, especially when trying to wean the youngster off of the medications. A good way to keep track of your youngster's progress is by keeping a daily stool calendar. Make sure to note the frequency, consistency (i.e., hard, soft, dry), and size (i.e., large, small) of the bowel movements. Patience is the key to treating encopresis. It may take anywhere from several months to a year for the stretched-out colon to return to its normal size and for the nerves in the colon to become effective again.

In the meantime, diet and exercise are extremely important in keeping stools soft and bowel movements regular. Also, make sure your youngster gets plenty of fiber-rich foods (e.g., fresh fruits, dried fruits like prunes and raisins, dried beans, vegetables, high-fiber cereal, etc.). Because children often cringe at the thought of fiber, try these creative ways to incorporate it into your youngster's diet:
  • Add bran to baking items such as cookies and muffins, or to meatloaf or burgers, or sprinkled on cereal. (The trick is not to add too much bran or the food will taste like sawdust.)
  • Add lentils to soup.
  • Add shredded carrots or pureed zucchini to spaghetti sauce or macaroni and cheese.
  • Bake cookies or muffins using whole-wheat flour instead of regular flour. Add raisins, chopped or pureed apples, or prunes to the mix.
  • Create tasty treats with peanut butter and whole-wheat crackers.
  • Make bean burritos with whole-grain soft-taco shells.
  • Make pancakes with whole-grain pancake mix and top with peaches, apricots, or grapes.
  • Serve apples topped with peanut butter.
  • Serve bran waffles topped with fruit.
  • Sneak some raisins or pureed prunes or zucchini into whole-wheat pancakes.
  • Top high-fiber cereal with fruit.
  • Top ice cream, frozen yogurt, or regular yogurt with high-fiber cereal for some added crunch.

Have your youngster drink plenty of fluids each day, including water and 100% fruit juices like pear, peach, and prune to help draw water into the colon. Try mixing prune juice with another drink to make it a little tastier. Also be sure to limit your youngster's total daily dairy intake (including cheese, yogurt, and ice cream) to 24 ounces or less.

Successful treatment of encopresis depends on the support the youngster receives. Some moms and dads find that positive reinforcement helps to encourage the youngster throughout treatment. Provide a small incentive (e.g., extra video-game time) for having a bowel movement or even just for trying, sitting on the toilet, or taking medications.

Whatever you do, don't blame or yell — it will only make your youngster feel bad and it won't help manage the condition. Show lots of love and support and, assure your youngster that he or she isn't the only one in the world with this problem. With time and understanding, your youngster can overcome encopresis.

 
More resources for parents of children and teens on the autism spectrum:
 
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COMMENTS:

•    Anonymous said… Aspergers kids often have issued recognizing when they need to go. The nervous system effectively shuts down due to over stimulation so they don't feel it. Get him on a schedule. 30-45 minutes after eating every time. If he's constipated, put him on myralax to get him regulated. Above all, talk to him. Explain to him why he may not recognize what's happening and how you would like to help him get control over it. Make sure you stress that you want to help "him" have control. Discuss it in detail with him. Aspergers kids love detail and logic and rules.
•    Anonymous said… Buy the squatty pottty, they sell them at bed bath and beyond, it is a special stool that you put your feet up on and it helps positioning too. Also kids with asd often have constipation and this may also be a reason they don't use the toilet, they associate it with pain.
•    Anonymous said… Growing up my younger brother did this also. We discovered he had epilepsy. He would have mild seizures we didn't even notice. They were so mild. The Doctor figured that when he had a seizure was when my brother would soil his pants. He was around 16 when he stopped.
•    Anonymous said… Have him tested for coeliac and gut problems, my son had trouble toilet training because he couldn't tell the difference between gas and solids due to wheat and dairy intolerances, which is apparently quite common on the spectrum.
•    Anonymous said… he may not be able to feel it happening because of sensory issues, maybe a regular toilet time about 4 times a day to help him to try to make his movements regular? do you have a very bright or very dark toilet/bathroom? this might be an issue. Another not quite as wonderful solution might be to get him incontinence pants
•    Anonymous said… I am grateful for the question/answer, thanks to the OP for putting it out there. My 7 yr old has only been PT for about 2 years, and while we rarely leave him with a sitter, it seems that he commonly will soil his pants in the care of others. Other than this issue, he is VERY well behaved for other caregivers, but once he does this, they are not eager for him to return. We have tried showing him where the potty is, and making sure he knows it's ok to ask to use the potty and all of that stuff. Separately, the comments on the article about kids even as old as teenagers have this problem are kind of breaking my heart for them, and for our future as well.
•    Anonymous said… If this is it (very common with kids on the spectrum) please take him to see a gastroenterologist (preferably one who is familiar with spectrum issues)
•    Anonymous said… I'm so glad someone asked this I've been having nothing but obstacles with my son and training. I've got him finally in underwear through out the day and using the potty, he stands over it straddling but hey he's doing it. However he refuses to sit and go number 2. When he has to go he runs and gets a pull up. I've tried praise, tokens and even not buying pull ups but it didn't work. He's 7, non verbal and yes stubborn. Any advice??
•    Anonymous said… I'm so glad someone finally asked this. I have been largely ignored when I asked for help in other groups.
•    Anonymous said… Its soo good to hear Im not alone. My son is 9, and I really felt like I was the only person dealing with this. It makes me sad that it could last a long time. Ive tried everything the doctors/counsellars suggested. The more I push him to correct it the more he pushes back. Hes gotten to a point where he cleans himself up, and I feel like thats all I can ask for at this point..
•    Anonymous said… keep schedule of time it's happening. Help him to recognize some signs (gassy, tummy pain, timing of when to sit). The thing is, if he sits on the toilet at said times, his muscles actually help him go so a routine may work. A possible different position on the potty / one leg up or stretched out for stability and muscle help. Sensory is definitely part of the problem if he can sit in it, I would think. An OT or ABA Autism specialist may be able to help. I would make a few calls and get some suggestions. When he has a good day, don't just praise, bring out the big guns, new video game (but take it back after 30 minutes and say he gets it again when he does a good day). His favorite cake, etc. Also explain the sanitary part of good hygiene and maybe have him watch a few videos (they process this faster and better usually, because of the visuals). Some kids grab onto the "we don't like germs" part and understanding it's toxic and needs to go away. This may/may not motivate them but it's worth a try. He needs a good motivator. See if there is something that breaks it down into small steps. 1. I feel pain 2. I get gas 3. I need to go to the bathroom all the way to lastly I wash my hands for 2 minutes with soap. Breaking things down (you can type it up) helps them and the visual of it broken down into small steps. At the end write something like "I am proud of myself that I can smell fresh and clean and minimize germs by going to the bathroom myself. I am growing up and helping at beating diseases and germs." Something like that. Good luck.
•    Anonymous said… Maybe a different position over the toilet? They tend to do different body positions. Good luck!
•    Anonymous said… My 14 year old son is the same way. He says it hurts to go when he sits on the toilet but not when he stands and crosses his legs. We've tried everything. We're on a waiting list for ABA therapy and this will be the first item they tackle.
•    Anonymous said… My child has demand avoidance- so any structured plans always made him more anxious and failed. We had to stop worrying about it and make him clean up when we noticed it. (It was really a problem for a while). Then it just stopped.
•    Anonymous said… my daughter also has epilepsy and while she doesn't soil her pants, she does pee in the bed every night, she is going to be 9 and still has to wear a pull up to bed. When i ask her why she doesn't get up to use the bathroom she says she doesn't feel it when it is happening. This could be the case with your grandson, if he is having a seizure he may have no memory of it. Best of luck. I still have no solution for my daughters nighttime accidents, she doesn't have accidents in the day any longer, but sometimes she waits so long to pee, i tell her to go she says she doesn't have to, then a few minutes later she is racing to the bathroom. Best of luck to you, its never easy but we love them.
•    Anonymous said… my son does this and u know what I make no big deal it is a sensory issue and u can't treat him any different because of it. I help him clean up u know why because it's embarrassing for him and he really has no idea till I show him that it happe s
•    Anonymous said… Not sure if this is relevant due to the age difference but I had that same problem with my 4 year old. We started giving him a fiber gummy every day. If he has the gummy he goes in the potty. If he doesn't have the gummy he will have an accident. Only thing I can come up with is he must not know and the extra fiber causes more force.
•    Anonymous said… Some children have gut problems and get leakage around a hard stool which soils their pants but they can be unaware of it. a regular gentle laxative can help, it can also be used as part of a soiling programme even if there is no constipation.
•    Anonymous said… To begin with, it does no good to ask him why he does it. He doesn't know, he's communicated that to you. Would you ask a baby why he soiled his diaper? No. They do it because they don't know any better. Neither does he. My initial thought is that he is regressing due to the emotional trauma in his life. It doesn't matter how he can willingly sit in it all day. It's possible that it's a sensory issue and he likes how it feels. The point is, it doesn't matter. Regarding the shutdown when his grandfather approaches him about it. My thoughts are that he is embarrassed & he doesn't know how to communicate it. He might not even know what it is that he's feeling. He just knows it's an uncomfortable feeling and he tries to hide it. Next, you ask him if he soiled his pants. I'm thinking that he's probably associated something negative (ie, being yelled at, scolded, spanked, etc.) with soiling his pants, which is why he deflects. If I were in your shoes, & I suspected (or knew) he'd done it, I'd tell him to come with you to the bathroom, say, "Lets look in your pants, is there poop? Yup. There's poop. Ok, what do we need to do?" And then guide him through the steps of changing, showering, etc. Don't ask. Make statements, instruct him, guide him. It does no good to ask at this point. To eliminate this behavior, I'd start with a token system. Start with very short periods of time. For every 5 minutes he's clean, give him a token. When he earns 3, he gets a reward. Let him choose what he's working for. When he can go longer than 5 minutes, up it to 10, increase the number of tokens he has to have, etc., until he gets up to a day. When he goes a day, clean & dry, throw that kid a party. If he has an accident, that's ok, don't scold, it's a bump in the road. He needs encouragement, not discouragement.
•    Anonymous said… Very comman in kids with ASD. My son is the same. Has been for yrs. He is 13.
•    Anonymous said… We did not get any help with the pediatrician. Only a referral to a behavioral clinic that was a year wait to get into and then were not the least bit helpful. You know it's a wasteland out here for that kind of assistance. Hopefully those who live in better areas have better services.
•    Anonymous said… When I worked for a Famiy Practice physician this issue would periodically come up. I would say to work with the child's doctor to come up with a plan to manage the encopresis. Eventully, I think it can be managed.
•    Anonymous said… You are doing it. Stay calm. Have him continue to change it himself. If he says no but you suspect he has, just remind him kindly that "when we have an accident we need to do our best to fix it" then maybe ask him if he remembers what to do to fix a accident in his pants. Letting him figure it out really has helped my son. He still has accidents, or walks around with poop on his hands. This a a difficult thing. You are not alone.

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Why Some Parents Don't Pursue a Formal ASD Diagnosis for Their Child

 "We suspect our 4 year old (Ryan) may have a form of autism, but my husband is reluctant to get a diagnosis for him for fear that it will cause more problems than it solves. What say you? I'm torn on this issue! I want to do what's best."

Because the symptoms of High-Functioning Autism (HFA) can be subtle, moms and dads may not recognize any differences in their youngster until he is age three or older. Pursuing a formal diagnosis is a family's individual decision to make.

There is no “correct” time to form this decision, although many parents agree that they wish to know their youngster's diagnosis definitively and as early in their youngster's development as possible.
 

If you are discovering that the criteria for HFA might have application for your youngster, then you are faced with a decision about seeking a diagnosis. You may NOT wish to pursue a formal diagnosis at this time for one or more of the following reasons:
  • You are scared or in denial of the situation
  • You are worried that your youngster will be stigmatized or singled out
  • You don't believe in labeling people's diversity
  • You don't feel that your youngster's differences are causing detriments in his life significant enough to obtain a diagnosis
  • You'd rather wait to see if anything changes as your youngster continues developing

The benefits of obtaining a diagnosis may be:
  • Accessing a system of services and supports designed to give your youngster a head start in life as early as possible
  • Being able to educate family, friends, and neighbors about your youngster's unique way of being when appropriate
  • Being able to educate your youngster in order to promote self-awareness and self-advocacy, as needed
  • Being able to put a name and a framework to a collection of symptoms and traits instead of perceiving it all as your youngster's “bad behavior” or somehow your fault
  • Understanding and appreciating sooner your youngster's lifelong unique qualities, personal needs, and talents

Grown-ups with the disorder who were never diagnosed as kids often ask, “Would it have been helpful to have had the diagnosis at an early age?” We are still a long way from effectively understanding autism spectrum disorders in a global sense, but having this knowledge early on in the lives of many adults could have aided them to:
  • Avoid struggles with mental health issues, or be better prepared to care for one's mental health
  • Be better able to initiate and sustain relationships
  • Be better equipped to locate viable employment opportunities that best match skills and talents
  • Be better prepared for higher education, or trade school
  • Be better prepared to avoid situations in which one may be unwittingly exploited
  • Experience greater success in school

A group of children with an autism spectrum disorder was asked a question: “Is it helpful to know you have it?” They were unanimous in explaining that it was helpful and cleared up a lot of misinterpretations people had about why they do what they do.

If you determine that HFA best describes your youngster's way of being and are interested in pursuing a diagnosis, your first course of action is to seek a referral to the appropriate clinician most qualified to make the diagnosis.

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

==> Videos for Parents of Children and Teens with ASD
 
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Dealing with Negative Emotions When You Discover Your Child Has an Autism Spectrum Disorder

When parents first discover that their child has an Autism Spectrum Disorder (ASD), they may experience an emotional struggle that looks something like this:
  • Denial: "Surely the doctors have misdiagnosed my child. He may be a little odd, but I have a hard time believing he has some kind of disorder."
  • Anger: "Why is this happening to me? What did I do to deserve this."
  • Bargaining: "Maybe there's a cure!"
  • Depression/Guilt: "I must have done something to make this happen."
  • Anxiety: "I don't even know where to start in dealing with this."
  • Acceptance: "This could be much worse than it is. I think I'll be able to handle it."

It's natural for moms and dads to get angry with themselves, each other, teachers, doctors, and even the child himself. Parents are trying to make sense of what has happened.

Moms and dads need to allow themselves to experience whatever emotions they are having. It's all part of adjusting to the challenges ahead. Trying to deny or minimize how hard it is to have a child with an Autism Spectrum Disorder only prolongs the fear, frustration and anxiety.
 

No matter how much you do for - and with - your ASD or high-functioning autistic youngster, you're probably going to feel some guilt. In part because no one knows what causes or cures this disorder -- so anything you did could be at fault (according to some theorists), and anything you do could help. But guilt can be crippling and can even get between you and your ability to be your best parent. The following tips may help you to take a deep breath and set guilt aside, at least for a moment:

1. Guilt-induced thought: "I can't leave any stones un-turned!"

What if that new therapy you just read about was THE therapy -- the one that would have cured your youngster if only you'd tried it? No one wants to think they denied their youngster a cure for a lifelong disability. But remember that one-on-one time with a loving adult is always a plus -- and it's unlikely that that new high-tech "cure" is the next penicillin!

2. Guilt-induced thought: "I should be learning more about the disorder!"

There's always more to learn. And if you live in a metropolitan area, there are always seminars, support groups and events to attend. But there's more to life than autism -- and it might make sense, just for once, to hire a sitter and go to the movies with your "significant other!"

3. Guilt-induced thought: "I should be making time for my other children and my spouse!"

If you're the primary caregiver for a youngster with high-functioning autism, you may be too overwhelmed to give other family members the time and attention they crave. While it really is important to make time for others in your life, it's also ok to ask for a few minutes to regroup...take a walk...or otherwise clear your mind. Your children and spouse deserve your focused attention -- something that's tough to give when you're still in "therapy mode!"

4. Guilt-induced thought: "I should be pushing for more _____ (fill in the blank) for my youngster!"

Depending upon what you read or who you listen to, you'll hear conflicting advice about what your youngster needs. More inclusion or less inclusion; more or different therapies; more or different activities, play dates, and so on forever. But even a typically developing youngster can get overwhelmed -- and youngster on the autism spectrum needs fewer transitions, less intensity and more structure than most. Maybe you do, too...!

5. Guilt-induced thought: "I should be spending this money on therapy!"

You broke down and bought that new jacket -- and now you wonder why you didn't spend the money on therapy... books on autism spectrum disorder ...learning toys ...or something else for your "special needs" youngster. But he or she is only one member of your family. You worked hard for your money, and your youngster will never miss that one extra session of therapy!

6. Guilt-induced thought: "I should be spending this time on therapy!"

You picked up a book while your youngster was watching TV -- and now you feel guilty. After all, every second counts, and you should be engaging him all day long. It's a nice idea, but even supermom can't be on call for her youngster 18 hours a day and still stay sane and healthy. Remember that your health and welfare count too!

7. Guilt-induced thought: "I should be working faster!"

Publicity about the importance of early intervention has caused a panic among moms and dads. The suggestion is that there's a window of opportunity early in life -- and that that window closes sometime around age three. The truth is, though, that children (and even adults) continue to develop and grow. While early intervention is important, it's not the only key to your youngster's ongoing success!
 

8. Guilt-induced thought: "I should give up more for my youngster!"

It's true that some families give up everything for their autistic youngster. They mortgage their homes, give up their careers, and end any "extras" to pay for therapies. This is, of course, a valid choice. But not every autistic youngster needs such a high level of commitment to thrive and grow. Your decision needs to take into account not only your youngster -- but you, your spouse, and the life you've chosen together.

9. Guilt-induced thought: "I somehow caused this problem!"

We know autism can't be caused by a lack of love. But was it that tuna you ate when you were pregnant? The vaccines you allowed your pediatrician to give your youngster? Since we don't know what causes the disorder, it can be easy to decide it was your fault. Chances are, though, that genetics -- something you can't control -- plays a significant role!

10. Guilt-induced thought: "Other people do more for their "special needs" youngster!"

And other people are thinner, fitter, richer and have bigger homes too! Comparing yourself to other families can be helpful if those others offer support and ideas -- but it can be destructive if it leads to a constant sense of guilt.

11. Guilt-induced thought: "I'm probably making a bad problem worse since I don't know about autism spectrum disorders."

You are not in this situation because you are a bad parent or lack the skill in raising a son or daughter. You may lack some of the skills necessary for raising a youngster on the spectrum, but this is not surprising given the level of complications that kids with the disorder may bring.

12. Guilt-induced thought: "I don't know if my child will be able to make it out there in the real world as an adult." Your child has a purpose in this life. And since the autism-package comes with strengths -- not just challenges -- you can expect to see your child do great things someday.

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