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Learning to Parent a Child with a Diagnosis of Autism Spectrum Disorder [Level 1]

“Our son now 6 went for assessment last Friday after a lot of form filling on his history etc. and doing tests with him, they - like me - have come to conclusion he has all the signs of a child with Autism (high functioning). Now that I finally have medical proof of what I have suspected for years, where do I go from here? How can I make his day easier? Basic tasks are major hurdles.”


When moms and dads seek help for their youngster, they encounter varied opinions – he'll outgrow it, leave him alone, it is no big deal, he just wants attention, and so on. Many professionals try to work with the high-functioning autistic youngster as if his disorder is like other disorders, but it is quite different. In most cases, there is a great misunderstanding by many people of the needs of these special individuals.

Diagnosis can be difficult. For the inexperienced, recognizing the defining characteristics of Autism can be difficult, and misdiagnoses are quite common. This is further complicated by the fact that an Autistic youngster or teen has many of the same characteristics found in other disorders. These various characteristics are often misinterpreted, overlooked, under-emphasized, or overemphasized. As a result, a youngster may receive many different diagnoses over time or from different professionals.

For example, if a youngster with Autism demonstrates a high degree of attention deficit hyperactivity disorder (ADHD) - that might be the only diagnosis he receives. However, this is a common characteristic of Autistic kids. The same holds true if obsessive or compulsive behaviors are displayed – the youngster gets labeled with obsessive-compulsive disorder (OCD) instead of Autism.

The following traits are also commonly seen in those with Autism in varying degrees. However, just because these traits are there, it doesn't mean that the youngster should be diagnosed differently; these traits should be noted as significant features of ASD [level 1]:


•    Anxiety
•    Difficulty with pragmatic language skills
•    Hyperlexia (advanced word recognition skills)
•    Motor deficits
•    Oppositional defiant disorder (ODD)
•    Sensory difficulties
•    Social skills deficits

Professionals who do not have much experience with Autism have a hard time identifying the defining characteristics. For example, social skill deficits may be noted by a professional, but then they are often downplayed because the youngster or adolescent appears to be having appropriate conversations with others or seems to be interested in other people. But with an Autistic youngster, the conversations are not generally reciprocal, so the youngster must be carefully observed to see whether or not there is true back-and-forth interaction. Also, many Autistic kids have an interest in others, but you need to clarify if the objects of their interest are age appropriate. Do they interact with peers in an age-appropriate fashion? Can they maintain friendships over a period of time or do they end as the novelty wears off? These are the types of observations and questions that must be asked in order to ensure a proper diagnosis.

==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

Another example of an overlooked area is the narrow routines or rituals that are supposed to be present. This does not always manifest as obsessive-compulsive behavior in the typical sense, such as repeated hand washing or neatness, but rather in the insistence on the need for rules about many issues and situations. These kids may not throw tantrums over their need for rules, but may require them just as much as the person who has a meltdown when a rule is violated. In essence, there is no single profile of the typical Autistic individual. They are not all the same.

Because of these subtleties and nuances, the single most important consideration in diagnosis is that the person making the initial diagnosis be familiar with autistic spectrum disorders. They should have previously diagnosed numerous kids. To make a proper, initial diagnosis requires the following:

1. An evaluation by an occupational therapist familiar with sensory integration difficulties may provide additional and valuable information.

2. It is important to include a speech and language evaluation, as those with Autism will display impairments in the pragmatics and semantics of language, despite having adequate receptive and expressive language. This will also serve to make moms and dads aware of any unusual language patterns the youngster displays that will interfere in later social situations. Again, these oddities may not be recognized if the evaluator is not familiar with Autism.

3. The youngster should see a neurologist or developmental pediatrician (again, someone familiar with autistic spectrum disorders) for a thorough neurological exam to rule out other medical conditions and to assess the need for medication. The physician may suggest additional medical testing (blood, urine, fragile X, hearing).

4. You (both moms and dads) and your youngster should have sessions with a psychologist where your youngster is carefully observed to see how he responds in various situations. This is done through play or talk sessions in the psychologist's office and by discussions with both moms and dads. The psychologist may ask you to complete checklists or questionnaires to gain a better understanding of the youngster's behaviors at home and/or school. If the youngster is in school, the psychologist may call the youngster's teacher or ask her to complete additional checklists. The checklists or questionnaires used should be ones that are appropriate for individuals with Autism. It is important to determine the IQ level of your youngster as well. An average or above-average IQ is necessary for a diagnosis of Autism.

==> How to Prevent Meltdowns and Tantrums in Children with Autism Spectrum Disorder

O.K. My youngster has been diagnosed with ASD – so now what?

Parenting kids displaying Autism characteristic behavior will often require an approach which is somewhat unique to that of other kids. Finding the balance between understanding the needs of a youngster with Autism and discipline which is age appropriate and situationally necessary is achievable when applying some simple but effective strategies. These strategies can be implemented both at home and in more public settings.

General Behavior Problems—

Traditional discipline may fail to produce the desired results for kids with Autism, primarily because they are unable to appreciate the consequences of their actions. Consequently, punitive measures are apt to exacerbate the type of behavior the punishment is intended to reduce, whilst at the same time giving rise to distress in both the youngster and parent.

At all times the emotional and physical well-being of your youngster should take priority. Often this will necessitate removing your youngster from a potentially distressing situation as soon as possible. Consider maintaining a diary of your youngster's behavior with a view to ascertaining patterns or triggers. Recurring behavior may be indicative of a youngster taking some satisfaction in receiving a desired response from peers, moms and dads or teachers.

For example, a youngster with Autism may come to understand that hurting another youngster in class will result in his being removed from class, notwithstanding the associated consequence to his peer. The solution may not be most effectively rooted in punishing the youngster for the behavior, or even attempting to explain the situation from the perspective of their injured peer, but by treating the root cause behind the motivation for the misbehavior...for example, can the youngster be made more comfortable in class so that they will not want to leave it?

==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

One of the means to achieve this may be to focus on the positive. Praise for good behavior, and reinforcement by way of something like a Reward Book, can assist. The use of encouraging verbal cues delivered in a calm tone are likely to elicit more beneficial responses than the harsher verbal warnings which might be effective on kids who are not displaying some sort of Autistic characteristic. If necessary, when giving directions to cease a type of misbehavior, these should also be couched as positives rather than negatives. For example, rather than telling a youngster to stop hitting his brother with the ruler, the youngster should be directed to put the ruler down.

Obsessive or Fixated Behavior—

Almost all kids go through periods of development where they become engrossed in one subject matter or another, but kids with Autism often display obsessive and repetitive characteristics, which can have significant implications for behavior.

For example, if an Autistic youngster becomes fixated upon reading a particular story each night, theymay become distressed if this regime is not adhered to, or if the story is interrupted. Again, the use of a behavior diary can assist in identifying fixations for your youngster. Once a fixation is identified, it is important to set appropriate boundaries for your youngster. Providing a structure within which your youngster can explore the obsession can assist in then keeping the obsession within reasonable limits, without the associated angst which might otherwise arise through such limitations. For example, tell your youngster that they may watch their favorite cartoon for half an hour after dinner, and make clear time for that in their routine.

It is appropriate to utilize the obsession to motivate and reward your youngster for good behavior. Always ensure any reward associated with positive behavior is granted immediately to assist the youngster recognizing the nexus between the two.

A particularly useful technique to try to develop social reciprocity is to have your youngster talk for five minutes about a particularly favored topic after they have listened to you talk about an unrelated topic. This serves to help your youngster understand that not everyone shares their enthusiasm for their subject matter.

==> Parenting System that Reduces Defiant Behavior in Teens with Autism Spectrum Disorder

Bridging the Gap Between ASD and Discipline and Other Siblings—

For siblings without the disorder, the differential and what at times no doubt appears to be preferential treatment received by an Autistic sibling can give rise to feelings of confusion and frustration. Often, they will fail to understand why their brother or sister apparently seems free to behave as they please without the normal constraints placed upon them.

It is important to explain to siblings or peers of Autistic kids and encourage open discussion about the disorder itself. Encouragement should extend to the things siblings can do to assist the Autism youngster, and this should be positively reinforced through acknowledgement when it occurs.

Sleep Difficulties—

Autistic kids are known to experience sleep problems. Kids on the spectrum may have lesser sleep requirements, and as such are more likely to become anxious about sleeping, or may find they become anxious when waking during the night or early in the morning.

Combat your youngster's anxiety by making their bedrooms a place of safety and comfort. Remove or store items which might be prone to injure your youngster if they decide to wander at night. Include in the behavioral diary a record of your youngster's sleep patterns. It may assist your youngster if you keep a list of their routine, including dinner, bath time, story and bed, in order to provide structure. Include an image or symbol of them waking in the morning to provide assurance as to what will happen. Social stories have proven to be a particularly successful tactic in decreasing a youngster's anxiety by providing clear instructions on how part of their day is likely to play out.

==> Unraveling the Mystery Behind High-Functioning Autism: Audio Book

At School—


Another Autistic characteristic is that kids will often experience difficulty during parts of the school day which lack structure. If left to their own devices their difficulties with social interaction and self-management can result in anxiety. The use of a buddy system can assist in providing direction, as can the creation of a timetable for recess and lunch times. These should be raised with class teachers and implemented with their assistance.

Explain the concept of free time to your youngster, or consider providing a separate purpose or goal for your youngster during such time, such as reading a book, or helping to set up paint and brushes for the afternoon tasks.

In Public—

Kids with Autism can become overwhelmed to the point of distress by even a short sojourn in public. The result is that many moms and dads with Autism simply seek to avoid as much as possible situations where their youngster is exposed to the public. While expedient, it may not offer the best long-term solution to your youngster, and there are strategies to assist with outings.

Consider providing your youngster with an iPad, or have the radio on in the car to block out other sounds and stimuli. Prepare a social story or list explaining to the youngster a trip to the shops, or doctor. Be sure to include on the list your return home. Consider giving your youngster a task to complete during the trip, or having them assist you. At all times, maintaining consistency when dealing with Autism and discipline is key. It pays to ensure that others involved in your youngster's care are familiar with your strategies and techniques, such as those outlined above, and are able to apply them.

Most importantly, don't hesitate to seek support networks for other moms and dads, and take advantage of the wealth of knowledge those who have dealt with the disorder before you. The assistance you can gain from these and other resources can assist you in developing important strategies to deal with problems with ASD [level 1] in a manner most beneficial to your youngster.

 

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

Rituals and Obsessions in Children with ASD [Level 1]

Question

I work with a young boy with ASD, and we (the parents and I) are looking for ways to help the child with repetitive (perseverative) thoughts, i.e., he wants to know what his snack is for school. He will ask his mom, his mom will tell him, then he will ask again while getting dressed, then ask again while getting on the bus, then he screams from the bus window, "what’s for snack today?", then the school nurse will call and say he needs to talk to Mom or Dad because he needs to ask again.

Answer

You’re referring to obsessive thoughts. Rituals and obsessions are one of the hallmarks of ASD [High-Functioning Autism]. In order to cope with the anxieties and stresses about the chaotic world around them, kids often obsess and ritualize their behaviors to comfort themselves. 
 
While some kids may spend their time intensely studying one area, others may be compulsive about cleaning, lining up items, or even doing things which put them or others in danger.
 

How to deal with an ASD child's obsessions:

1. Be prepared for resistance by arming yourself with suggestions and alternatives to your youngster's behavior. A great way of doing this is by creating a "social story". Carol Gray's Social Stories site is a great resource for parents and educators alike to create books which will modify behavior in kids with autistic spectrum disorders.

2. Choose your battles wisely. Breaking an obsession or ritual is like running a war campaign. If not planned wisely or if you attempt to fight on many fronts, you're guaranteed to fail. Not only is it time consuming and tiring, it means you can't devote 100% to each particular area. 
 
So, if you have a youngster with a game obsession, a phobia of baths and bedtime troubles, choose only one to deal with. Personally, and I have had that choice, I dealt with the bedtime troubles. Using logic, a sleep deprived youngster certainly isn't going to deal with behavioral modification in other areas well. Plus, it was having an effect on his overall health. Deal with the worst first!
 

3. Communicate with your youngster to explain the effect that his or her ritual is having on your family as a whole. My son's 2am wake-up calls were affecting me mentally, emotionally and physically, and I told him so. I pulled some research off the internet about sleep needs and discussed this with him.

4. Speak to professionals for advice. Contact your pediatrician for recommendations for behavior therapists. Your local parent support groups and national associations, such as the National Autistic Society, will not only provide you support but the information you need to move forward with your youngster.

5. When breaking an obsession or ritual, examine the ways that you may have fed into this. With my son's bedtime activities, I found I was too tired to fight his waking up at 2am. While dealing with this ritual, I ensured I was in bed early myself so I had enough sleep in me to knock his night owl tendencies on the head.

6. When tackling any problem with any youngster, ASD or not, it's always best to remain calm at all times. Kids can feed off your anger, frustration and anxiety, so keeping a level head at all times is essential. If you feel a situation is escalating and elevating your blood pressure, take a step back and collect yourself.

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

 

COMMENTS:

•    Anonymous said… Can anyone advise when a child is fixated on a place eg the park, they will ask from the min they wake all day long. This is usually only resolved by going to the park or trying to reason that another day/time would be better. Tia.
•    Anonymous said… Can he take/pack his own snack and bring it in? He would have more control and might help him feel less anxious..?
•    Anonymous said… Draw a pic of snack
•    Anonymous said… I think this sounds like ADHD. He is not holding onto the information long enough to understand its meaning. I say don't make more work for yourself or the parents. Allow him to choose his snacks at the grocery store and pack them himself every morning.
•    Anonymous said… It's his routine,comfort, his way of processing that he is on way to school and maybe not very able to cope with that.
My son will say every night 'are you coming in afterwards'.
He knows I will come in as soon as I've read my younger daughter he story. And I tell him. But he has to ask. It's just what he does. Much to everyone's annoyance...that's his routine. Maybe it's because he needs me to say it to settle in his bed? Maybe he is checking? Maybe it's his comfort?
But, he asks every night and that's that!
•    Anonymous said… My son gets stuck on getting things he wants ie video games . He will basically badger us over and over about the thing he wants. When he earns it he will move onto something else he wants. I am not sure if this is bipolar mixed with Aspergers?
•    Anonymous said… Some good ideas here. You could also try giving limits to when he can ask and then reducing the number to once. So he can ask 3 times before school and no more. Then reduce to twice then once. All with the rule clearly stated and warning of it reducing. I found limiting things very effective. It may be the asking that is the obsession rather than the snack itself. Good luck.
•    Anonymous said… Take a picture and print it off
•    Anonymous said… Take a picture of his snack with his cell phone or tablet. Of he doesn't have one, plan ahead, take a picture of it, print it and let him put it in his pocket or put it in a lanyard with his lunch card. That way he can look at it for the answer.
•    Anonymous said… This is when I worry a child will be misdiagnosed with OCD. He can't process his snack for some reason, it's not obsession. The ideas above to help him process are great ideas.
•    Anonymous said… Try writing it on sticky notes and post them in the places he usually asks, his bedroom, bathroom, and kitchen. Also give him a note for his pocket too. I had to do this for my son and when he would ask, I would just point to the note. He got to the point where he would look for the note instead of asking. I also like the picture idea. My son was/is very visual. He remembers better if he can see the actual item. Hope this helps.
•    Anonymous said… We also take pics of things she needs to part with so she can look at them anytime (iPad) no clutter!
•    Anonymous said… We went thru this in second grade and started using a see through bag so he could learn to how to find the answer in his own. Worked like a charm. Keep laughing it helps
•    Anonymous said… Write it down for him and stick it in his pocket.Beware and prepare him that it could change if they are out of said snack.I get around the time thing like that.Ex.....I plan to be there at 12:00 but it could be 12:ish......ish is my favorite thing to add because it builds flexibility.

Post your comment below…

How to Diffuse Meltdowns in a Child on the Autism Spectrum

Question

I'm looking for some ways to diffuse a meltdown, and what I should do after its over …my daughter screams, cries, swears at me …tells me she hates me and I’m the worst mum. I am getting better at not getting angry back, but it seems to enrage her more when I don't react... It leaves me mental drained... I feel the more this happens the more I don't feel the mother daughter connection (it sounds so awful). I love her, but I just want my little girl back.

Answer

The visible symptoms of meltdowns are as varied as the high-functioning autistic kids themselves, but every parent is able to describe their youngster’s meltdowns behavior in intricate detail.

Meltdowns can be short lived, or last as long as two hours. They can be as infrequent as once a month (often coinciding with the lunar cycle/full moon) or occur as frequently as 4-6 times a day.

Whatever the frequency and duration, an autistic youngster having meltdowns is difficult for parents/care-givers/teachers to deal with.

Meltdowns in autistic kids are triggered by a response to their environment. These responses can be caused by avoidance desire, anxiety or sensory overload. Triggers need to be recognized and identified.
 

So how do we deal with meltdowns? What should you do when meltdowns occurs?

An adults’ (parents/care-givers/teachers) behavior can influence a meltdown’s duration, so always check your response first.

1. Calm down
2. Quiet down
3. Slow down
4. Prioritize safety
5. Re-establish self-control in the youngster, then deal with the issue

1. Take 3 slow, deep breaths, and rather than dreading the meltdowns that’s about to take place, assure yourself that you’ve survived meltdowns 1000 times before and will do so this time too.

2. Keep your speaking voice quiet and your tone neutrally pleasant. Don’t speak unnecessarily. Less is best. Don’t be “baited” into an argument. (Often autistic kids seem to “want” to fight. They know how to “push your buttons”, so don’t be side-tracked from the meltdowns issue).

3. Slow down. Meltdowns often occur at the most inconvenient time e.g. rushing out the door to school. The extra pressure the fear of being late creates, adds to the stress of the situation. (Autistic kids respond to referred mood and will pick up on your stress. This stress is then added to their own.) So forget the clock and focus on the situation. Make sure the significant people in your life know your priorities here. Let your boss know that your youngster has meltdowns that have the capacity to bring life to a standstill, and you may be late. Let your youngster’s teacher know that if your youngster is late due to meltdowns that it’s unavoidable, and your youngster shouldn’t be reprimanded for it.

4. Prioritize safety when your youngster is having meltdowns. Understand that they can be extremely impulsive and irrational at this time. Don’t presume that the safety rules they know will be utilized while they’re melting down. Just because your youngster knows not to go near the street when they are calm doesn’t mean they won’t run straight into 4 lanes of traffic when they are having a meltdowns. If your child starts melting down when you’re driving in the car, pull over and stop. If your youngster tends to “flee” when melting down, don’t chase them. This just adds more danger to the situation. Tail them at a safe distance (maintain visual contact) if necessary.

5. When your kiddo is calm and has regained self-control, he will often be exhausted. Keep that in mind as you work through the meltdowns issue. Reinforce to your youngster the appropriate way to express their needs/requests.
 

Remember that all behavior is a form of communication, so try to work out the ‘message’ your youngster is trying to convey with their meltdowns, rather than responding and reacting to the behavior displayed.

Ways to help your autistic youngster calm down:

1. Another effective mediation method is to have the youngster sit or lay down with eyes closed and visualize a scenario that the youngster chooses. It should be something that is comforting to the youngster such as a fun vacation or a day at the park. Talk the youngster through the meditation and tell the youngster to feel as if the scenario is actually happening. Have the youngster picture him or herself interacting with other kids in a positive manner. This will plant the idea into the subconscious and can help with the youngster's actual peer relationships.

2. Establish a certain time as quiet time. This can be after dinner a little before bed time. Kids with autism like routines and this is a good way to help him or her to get used to settling down for the evening. The youngster can read or draw or write his or her thoughts during this time. Writing can be very effective in helping the youngster learn self expression.

3. Have the youngster listen to classical or soft music. Just having this type of music playing in the background at home can create a sense of calm.

4. Have the youngster meditate. There are two ways to do this. One way is to have the youngster sit or lie down with eyes closed and take long slow deep breaths in through the nose and hold his or her breath for four seconds and then slowly exhale through the mouth. You can guide your youngster through this by saying, "Take a long, slow deep breath in through your nose, hold, hold, hold, hold your breath. Now slowly breathe out through your mouth." Try this for ten minutes either right before bed time or first time in the morning.

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

My child has been rejected by his peers, ridiculed and bullied !!!

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

Click here to read the full article…

How to Prevent Meltdowns in Children on the Spectrum

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

Click here for the full article...

Parenting Defiant Teens on the Spectrum

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

Click here to read the full article…

Older Teens and Young Adult Children with ASD Still Living At Home

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

Click here to read the full article…

Parenting Children and Teens with High-Functioning Autism

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

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to read the full article...

Highly Effective Research-Based Parenting Strategies for Children with Asperger's and HFA

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

Click here for the full article...

My Aspergers Child - Syndicated Content