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Working with Schools to Develop an IEP

Question

We are already making preparations for the upcoming school year. Can you give me information on working with the school IEP for my Aspergers son?

Answer

When you have a child with Aspergers (high-functioning autism), IEP negotiations are extremely important. As the parent, you hold a vital position on the IEP team and unfortunately, many moms and dads often feel undermined and in some cases, bullied into accepting the opinions and terms decided by the educational staff. Your input is not only important, but also necessary in the development of a well-rounded IEP for your youngster.

In the days and weeks before your IEP meeting, there are several things you can do to make the experience more pleasant and the outcome more positive. This IEP is imperative to your son’s future.

Here is a list of suggestions for IEP preparation:
  1. Know your son’s strengths and weaknesses so there are no big surprises during the IEP meeting. If you know your son’s abilities and weaknesses, you will be better prepared to request additional services when needed and not offered.
  2. Make notes, ask questions, and request clarification before and during the IEP meeting. When goals are set, be sure you understand the wording and that your thoughts are taken into consideration.
  3. Represent yourself as an equal member of the IEP team. Dress respectably, speak intelligently, and do not feel inferior. Yes, the other members are education professionals, but you are an expert in your son.
  4. Request access to all updated evaluation reports before the IEP meeting in order to prepare for the meeting. You should not have to settle on glancing over the reports or hearing the results second-hand during the meeting.
  5. Request time to review the IEP before signing. There is no reason to rush through this process. Take the IEP home, read over it, and make changes if necessary. Do not sign until you are sure your son has the best IEP possible.
  6. Schedule private evaluations, if you desire. Medical evaluations, including medically referred psychological testing, will present a complete diagnostic picture. Educational evaluations are primarily geared towards diagnostics that affect only the specifics of the education process. These two diagnoses can be different. Without a medical evaluation and official medical diagnosis, your son may miss vital services.

When you have a youngster with Aspergers, the IEP should be treated as the important document and process that it is. The IEP is the backbone to his educational assistance. If you have any questions about appropriate goals or specific questions about the IEP process, there are many great resources available online.

The Aspergers Comprehensive Handbook

Aspergers/Autism Online Resources

Information—

AHA/AS/PDD - Advocates for Individuals with High Functioning Autism, Asperger's Syndrome and other Pervasive Developmental Disorders, Corp
·         Asperger Syndrome Educational Network, Inc. (ASPEN)
·         Aspies e.V. - Menschen mit Asperger-Syndrom - German self-help organization of people with Asperger Syndrome
·         Autism Research Institute
·         Kansas Council on Developmental DisabilitiesThe Autism Connection - A non profit web site dedicated to providing information and resources about Autism to the community
·         Online Asperger Syndrome Information and Support (O.A.S.I.S.)
·         Spectrum Connection - Your bi-state (KS & MO) resource for families living with autism
·         The Autism Source

Special Ed Law—


Educational Resources—

·         College Internship Program at The Brevard Center,
Melbourne, Florida
(for students with Asperger Syndrome and Non Verbal Learning Differences)
·         Family Education
·         Jenny's Site for Special Needs Kids - Website of author Jenny Clark

Family Advocacy—

·         MPACT/Missouri Parents Act
·         Families Together

Resource Centers—


Parent Support Groups—

·         Vermont Autism Support Daily - free online support group for parents, friends and families of children with autism. Live meetings are also held the first Monday of each month from 7 - 9 p.m.
·         Kansas Support Groups
·         FEATNT - Families for Early Autism Treatment-North Texas
·         Autism Center of Tulsa

Organizations

·         Technical Alliance Center
·         Sommerville Young Adult Community - designed for those diagnosed with Asperger Syndrome, Pervasive Developmental Disorders, and Fetal Alcohol Spectrum Disorders ages 18-25
·         AutismAsperger.net - Website of author, Stephen Shore
·         Autism Society of Kansas
·         Autism Society of America
·         AspergerInformation.org - Website of author, Rebekah Heinrichs
·         AHA/AS/PDD - Advocates for Individuals with High Functioning Autism, Asperger's Syndrome and other Pervasive Developmental Disorders, Corp.

Social Skills Groups—

·         Kansas Social Skills Groups

Conferences—

·         O.A.S.I.S. Conferences
·         NLD on The Web

Bookstores—

·         Parentbooks
·         Starfish Specialty Press

Suggested References/ Libraries/ Newsletters/ Magazines—

·         "Positively Autism" Magazine (read a sample issue)
·         Bibliography on Autism
·         Books on the Autism Spectrum
·         Heart for Autism - Ordinary Families Doing Extraordinary Things

Discussion Boards—


Links for Kids—

·         Stress Free Kids - help children manage anxiety, stress, and anger while promoting self-esteem and peaceful sleep
·          Kids.Net.Au - A search engine just for kids!

Adults—

·         Eccentrically Speaking - helping adults with autism work on social communication skills

Recommended Parenting eBooks—

"Misbehavior" or "Aspergers-Related Behavior"

Question

My Aspergers son will not get off the computer when asked. How do I know if this “misbehavior” is Aspergers-related – or pure disobedience?

Answer

I don't think it matters in this case. Aspergers (high functioning autism) is a disorder, but not a license to do whatever you want to do. If he wants to get on the computer, then use a timer. Most often, when an Aspergers child is on the computer, the parent says, "You can stay on for 15 minutes,” but then the next day, the parent says, “You have to get off the computer in 5 minutes” …then the day after, “O.K., just 30 more minutes.” This is very inconsistent! The child knows that if it's your opinion of when it stops, he can use emotional blackmail to get you to change your mind. That's why you should get a timer and say, "O.K., you've got 15 minutes, and when the timer goes off, that's the end."

You can get a computer program that you can load onto your computer, and every so often, it flashes a message across the screen saying, "Time to take a break, you've been on this long enough." It's not the parent saying this, the computer says it – and then the Aspergers child believes it! So find one of those programs. It's the timer that says, “You've got to stop” – not you, the parent.

The Aspergers Comprehensive Handbook

Parenting Aspergers Children: Helpful Strategies


Aspergers is a developmental disorder falling within the autistic spectrum affecting two-way social interaction, verbal and nonverbal communication and a reluctance to accept change, inflexibility of thought and to have all absorbing narrow areas of interest.


Individuals are usually extremely good on rote memory skills (facts, figures, dates, times etc.) many excel in math and science. There is a range of severity of symptoms within the syndrome, the very mildly affected youngster often goes undiagnosed and may just appear odd or eccentric.

While Aspergers is much more common than Autism it is still a rare condition and few individuals, including professionals, will know about it much less have experience of it. It seems to affect more boys than girls. In general terms they find making friends difficult, not understanding the subtle clues needed to do so. They often use language in a slightly odd way and take literal meanings from what is read or heard. They are happiest with routines and a structured environment, finding it difficult to decide what to do they fall back on to their preferred activities. They love praise, winning and being first, but find loosing, imperfection and criticism very difficult to take. Bad behavior often stems from an inability to communicate their frustrations and anxieties. They need love and tenderness, care, patience and understanding. Within this framework they seem to flourish.

Kids with Aspergers are for the most part bright, happy and loving kids. If we can help break through to their 'own little world' we can help them to cope a little better in society. They have a need to finish tasks they have started. Strategies can be developed to reduce the stress they experience at such times. Warnings that an activity is to finish in x minutes can help with older kids. With younger kids attempts to 'save' the task help - videoing a program, mark in a book etc.

As the kids mature some problems will get easier, but like all other kids new problems will emerge. Some teenagers can feel the lack of friendships difficult to cope with as they try hard to make friends in their own way but find it hard to keep them. This is not always the case; many have friends who act as 'buddies' for long periods of time. Social skills will have to be taught in an effort for them to find a place in the world ... so take all opportunities to explain situations time and time again ..... and one day.......it may work!

Please bear in mind that booklets such as this do tend to detail all the problems which can be found within a syndrome but that does not mean every youngster will have all of them. Each youngster will also have different levels of achievements and difficulties. They are after all just as the others ... individuals!

Is Aspergers The Same As Autism?

The debate on this question still continues, some experts say that Aspergers should be classified separately; others argue that the core difficulties are the same, only the degree to which they are seen in the kids actually makes the difference. One expert - Uta Frith - has referred to Aspergers kids as 'Having a dash of Autism'.

Autism is often interpreted as a withdrawal from normal life - to live in the persons own fantasy world. This is no longer the real meaning of Autism. The severity of the impairments is much greater than in Aspergers, and often the youngster will have little or no language. Learning problems are more common in classic Autism. In Aspergers speech is usual and intelligence (cognitive ability) is usually average or even above average.

For the moment it is taken that the similarities are enough for both Autism and Aspergers to be considered within the same 'spectrum' of developmental disorders. While a clear diagnosis is essential, it can change through life. The autistic traits seen in young kids can often seem less severe as the youngster matures and learns strategies to cope with his/her difficulties.

Key Features—

The main areas affected by Aspergers are:

• Communication
• Narrow Interests / Preoccupation's
• Repetitive routines / rituals, inflexibility
• Social interaction

Social Interaction—

Kids with Aspergers have poor social skills. They cannot read the social cues and, therefore, they don't give the right social and emotional responses. They can lack the desire to share information and experiences with others. These problems are less noticeable with moms and dads and adults, but it leads to an inability to make age appropriate friends. This in turn can lead to frustration and subsequent behavior problems. They find the world a confusing place. They are often alone, some are happy like this, others are not. They are more noticeably different among peer groups in unstructured settings i.e. playgrounds. Their naiveté can cause them to be bullied and teased unless care is taken by assistants or buddies to integrate and help protect them. They can often focus on small details and fail to see the overall picture of what is happening in any situation.

Communication—

Both verbal and nonverbal communications pose problems. Spoken language is often not entirely understood, so it should be kept simple, to a level they can understand. Take care to be precise. Metaphor s (non-literal expressions - 'food for thought') and similes (figures of speech - 'as fit as a fiddle') have to be explained as kids with Aspergers tend to make literal and concrete interpretations. Language acquisition - learning to speak - in some cases can be delayed. They make much use of phrases they have memorized, although they may not be used in the right context. A certain amount of translation may be needed in order to understand what they are trying to say.

Spoken language can sometimes be odd, perhaps they don't have the local accent or they are too loud for a situation or overly formal or speak in a monotonous tone. If the youngster with Aspergers has a good level of spoken language you must not assume their understanding is at the same level. Some talk incessantly (hyper verbal) often on a topic of interest only to themselves without knowing the boredom of the listener.

Difficulties in using the right words or forming conversations are part of semantic-pragmatic difficulties. They appear often to talk 'at' rather than 'to' you, giving information rather that holding proper conversations. Body language and facial expressions of a youngster with Aspergers can appear odd (stiff eye gaze rather than eye contact) and find 'reading' these things in others gives rise to further difficulties. Early age is known as Hyperlexia. Some kids have remarkable reading abilities although you should check if they also understand the text. The ability to read fluently without understanding the meaning is known as Hyperlexia.

Narrow Interests / Preoccupations—

One of the hallmarks of Aspergers is the youngster's preoccupation (or obsession) with certain topics, often on themes of transport - trains in particular-or computers, dinosaurs, maps etc. These pre-occupations, usually in intellectual areas change over time but not in intensity, and maybe pursued to the exclusion of other activities.

Repetitive Routines / Inflexibility—

Kids often impose rigid routine on themselves and those around them, from how they want things done, to what they will eat etc. It can be very frustrating for all concerned. Routines will change from time to time, as they mature they are perhaps a little easier to reason with. This inflexibility shows itself in other ways too, giving rise to difficulties with imaginative and creative thinking. The youngster tends to like the same old thing done in the same old way over and over again! They often can't see the point of a story or the connection between starting a task and what will be the result. They usually excel at rote memory - learning information without understanding, but it can still be an asset. Attempts should always be made to explain everything in a way they can understand. Don't assume because they parrot information back that they know what they are talking about.

Education—

If the youngster with Aspergers is to be educated in a mainstream school it is important that the correct amount of support is made available. In order to get the correct support a Statement of Special Educational Needs should be drawn up from the various advice supplied by you and the specialists. This procedure, when it begins, can take 6 months and be a very stressful and confusing time - don't be afraid to contact individuals who can help, this need not be a professional it may just be someone who has done it all before.

It is beneficial if the school of your choice is willing to learn about the difficulties that they and the youngster will face, some schools are better than other on this score. Looking at several schools will give a better picture of exactly what is available. The support currently offered in mainstream school is by Special Support Assistants (SSA) for a certain number of hours each week based on the youngster's needs in order to help the youngster access the curriculum and develop in a social setting. A support teacher with specialist knowledge of Autism should support the youngster, SSA, teacher and school in understanding and teaching the youngster. Other professional input may also be required such as speech and language therapy to help develop skills.

The home/school link is vital; a diary can prove invaluable giving two way communication on achievements and problems on a regular basis.

Helpful Strategies—

There are many things you can do to help your youngster better understand the world and in doing so make everyone's lives a little easier.

The ideas below are only suggestions which you may or may not find helpful:

• Begin early to teach the difference between private and public places and actions, so that they can develop ways of coping with more complex social rules later in life.
• Don't always expect them to 'act their age' they are usually immature and you should make some allowances for this.
• Explain why they should look at you when you speak to them.... encourage them; give lots of praise for any achievement - especially when they use a social skill without prompting.
• Find a way of coping with behavior problems - perhaps trying to ignore it if it's not too bad or hugging sometimes can help.
• In some young kids who appear not to listen - the act of 'singing' your words can have a beneficial effect.
• Keep all your speech simple - to a level they understand.
• Keep instructions simple ... for complicated jobs use lists or pictures.
• Let them know that you love them - wart's an' all' - and that you are proud of them. It can be very easy with a youngster who rarely speaks not to tell them all the things you feel inside.
• Limit any choices to two or three items.
• Limit their 'special interest' time to set amounts of time each day if you can.
• Pre-warn them of any changes, and give warning prompts if you want them to finish a task... “When you have colored that in we are going shopping.”
• Promises and threats you make will have to be kept - so try not to make them too lightly.
• Teach them some strategies for coping - telling individuals who are teasing perhaps to 'go away' or to breathe deeply and count to 20 if they feel the urge to cry in public.
• Try to build in some flexibility in their routine, if they learn early that things do change and often without warning - it can help.
• Try to get confirmation that they understand what you are talking about/or asking - don't rely on a stock yes or no - that they like to answer with.
• Try to identify stress triggers - avoid them if possible -be ready to distract with some alternative 'come and see this...' etc.
• Use turn taking activities as much as possible, not only in games but at home too.

Remember, they are kids just like the rest, they have their own personalities, abilities, likes and dislikes - they just need extra support, patience and understanding from everyone around them.


==> How To Prevent Meltdowns and Tantrums In Children With High-Functioning Autism and Asperger's

How do you effectively discipline a child with Aspergers?

Question

How do you discipline a child with Aspergers? Nothing I'm doing is working, and quite honestly, it seems to make matters worse as every attempt leads to a meltdown! Help!! I'm running out of options. 

Answer

Unfortunately, I see a number of teachers saying, "It's a matter of discipline!" Well, sure. Certainly having Aspergers (high-functioning autism) is not a license to do whatever you want to do, and there must be natural consequences. But with the youngster with Aspergers, one must spend more time explaining what they did that was wrong, why it was wrong, what he is supposed to do instead, and how to know when he is supposed to do it.

Quite often, when the youngster is very emotional and upset, it is not a good time to explain these things. When the Aspergers child has emotion – he does not have logic. Look at love. Love is never logical. The same goes with anger or distress. So, that may not be the time to explain consequences, etc.

You may need to deal with the situation when the Aspergers youngster is relaxed… possibly a couple of hours later. You can say, “Okay let's learn from this. Let's go through what happened.” Often what you find is a miscommunication or a misinterpretation by one or both parties. Both parties need to see the perspective of the other. But the time to do that may be when the Aspergers child is reasonable – not emotional. We do drawing, pictures and social stories… all these sorts of things to go through that process.

Often the Aspergers youngster won't follow the rules unless he sees a logical reason why, or if he sees a value to himself. And, if you talk about "people won't like you" - who cares? Or, "do it to please your teacher" - why should I please her? So what we have to use is a very concrete approach.

For example, “If you do this, this happens… If you do that, the other happens...” …and so on. But your explanation has to be very logical – almost like having a rule book. “There are consequences for what you do, and this is the logic.”

If you start getting into complicated personal relationships, you will never get your message across to the Aspergers child or teen. You have to be quite firm in the consequences with that child, but you do need to spend time explaining things.

For example, if you have an Aspergers child who has hurt his sister, you can say, "Say sorry" …and the Aspergers child says "sorry" …and as far as he is concerned, that's the end of it! But he also must do, or donate, something to his sister (e.g., tidy his sister's room or share a chocolate bar that he was going to have at lunch time). He could also make an apology card. The point being – he must actually do something tangible, rather than just "sorry," and that's it.

My Aspergers Child: Preventing Meltdowns and Tantrums in Aspergers Children

Aspergers Teens and Social Difficulties


The primary aspect of Aspergers (high functioning autism) that characterizes it as autistic is the problem of human connectedness. The term most commonly used to describe this core weakness of human connection is “reciprocity.” This refers to the teen’s ability to engage other people in a way that makes others feel connected or not. In social conversation with a teen with Aspergers, eye contact is often poor, fleeting, or absent. Aspergers teens may not be able to read subtle gestures and facial changes or to interpret subtleties in language such as irony or sarcasm. They do not read or respond as most people do to small changes in body posture or to gestures. They seem either distant, stiff, or in other ways unconnected.


Aspergers teens not only seem disconnected, but in some cases uninterested in being in relationships with others. They may generally have very little interest in the feelings, experiences, other human qualities, or possibilities of others and, hence, lack empathy. They do not seem to derive pleasure from engaging others, learning about them, talking with them, or sharing experiences. In the many cases where the symptoms are milder, the teenager may wish to connect with others, but simply does not know how. He may have feelings for others, but can’t seem to mobilize the demonstration of those feelings.

At first, “neurotypical” (normal) teenagers in common social contexts (such as a school football game) may see peers with Aspergers as shy and retiring, quiet, stiff, or withdrawn. As the uninitiated begin to talk with Aspergers teens, it may appear that they seem to respond robotically. They have a monotonic voice that often comes across as reminiscent of the aforementioned geeks or nerds. The initial impression is that one is dealing with an eccentric.

Aspergers teens seem to lack warmth to their more socially apt peers. There is a sense that the teen just isn’t there when he is interacting with you. He may not know what to do when someone has finished making a point. He may not know when to stop talking and may seem overly interested in his topic of conversation and not yours, unless you are equally fascinated with his areas of interest.

All too frequently, however, teens with Aspergers seem not just alien and unconnected, but preoccupied with one or two subjects, which they will talk about endlessly. They may take offense easily over unrelated trifles or become upset when others do not share their enthusiasm for a given area of interest. There is a kind of immaturity or somewhat fixed developmental delay, in which the needs, interests, feelings, perspectives, and thoughts of others just aren’t real or important to them. Intervention in teaching about the lives of others is important here.

In conversation with an Aspergers teen, you may find yourself doing most of the work in the exchange, asking most of the questions, and waiting for obvious follow-ups that don’t occur. His frequently robotic language and responses seem to suggest that others might as well be inanimate. It is not just a question of only lacking the ability to read social cues. There is an output problem, not knowing how to engage and maintain relationships with others, and most certainly an internal problem, in which social/emotional information is absent, confusing, undeveloped, and/or not valued. He may not have labels for feelings.

The teen with Aspergers may seem odd, making you uncomfortable. The simplest conversation among “neurotypical” people is kind of a naturalistic dance, a flowing interchange of cues and fitting responses. Because there really is quite a lack of tolerance in school for not being able to engage in this kind of behavior (especially with the school being the “gossip mill” that it normally is), a teenager with Aspergers soon becomes grist for that gossip mill and finds himself ostracized for vague reasons. It is difficult not to overemphasize the power of having the appearance of being a “regular person” in high school.

Many Aspergers teens have created their own support groups and chat sites where they feel valued and where their strengths are valued. Writers like Mark Hutten have spent many years explaining to the rest of us these experiences in learning, adjusting, and living shared by teens with Aspergers.

There is an excellent portrayal of a young adult with Aspergers by Josh Hartnett in the film Mozart and the Whale. In his portrayal, Hartnett appears to convincingly embody all of the characteristics and many of the challenges of an individual with Aspergers. The lead character demonstrates considerable awareness of the challenges associated with this condition and shows adaptation to the world of people with neurodevelopmental differences and the world at large.

Discipline for Defiant Aspergers Teens

Teaching Aspergers Children To Lose Gracefully

Question

Jack is attending speech therapy and we are trying to work on games without having a meltdown. If Jack is losing or sees another person is about to beat him at the game he completely loses control and has a meltdown. We have tried random games, board games (i.e., snakes and ladders). His meltdown would last a half hour before he can get himself back into control. Do you have any suggestions? He is obsessed about winning rather than playing for fun.

Answer

My Aspergers granddaughter (Kayla) and I played games most of her life when she was younger. The one thing I decided early on was that I would not "let" her win. I wanted to teach her that there are winners – and losers. I wanted her to know that sometimes she's going to be the winner, and sometimes her opponent will win. That's life!

Some games are games of chance. So when we played, she had the same odds of winning as I did. Other games are games of skill. When we played, I didn't go easy on her. I wanted her to play her best, and if she scored more points than I did – that's great. If not, I expected her not to behave like a sore loser. Of course, that's easier said than done. Many times when she lost a game she would have a tantrum and say that she did not want to play anymore. Other times she would beg me to play "one more game", hoping that she would win the next game for sure.

So, when you play games with your Aspergers child, you will have to deal with him losing and possibly not taking it so well. Here are a few suggestions on how to teach your child to lose gracefully:
  • Choose an activity that requires cooperation as well as competition (e.g., freeze tag, red rover, or duck duck goose).
  • Focus on how well your child is improving in a given game and not on the fact that they lost.
  • If your child is the loser, offer to play again. He still may not win, but at least he gets another chance to try.
  • Make it a rule that the winner has to say "good game" to the loser.
  • Play games of chance to illustrate that sometimes winning depends on luck and not skill (e.g., games like “Candyland” and “Snakes and Ladders”).
  • Play games that last forever, like Monopoly, in which your child (and you) will run out of steam before anybody wins or loses.
  • To make the loser feel okay about losing, agree before the game starts that the loser will get a prize. For instance, picking the dessert for dinner (so there is actually some benefit to losing). Don't do this for every game, however.

By around age 4, children have many more skills than they did when they were younger, and they know it — and therein lies the rub. They're developing a sense of what they can do and often expect a lot of themselves. When reality clashes with that sense of their ability, they can take it hard. They're in constant motion, seeking out adventure. Especially around ages 3 and 4, children are very imaginative in their play and want to believe they're capable of much more than they really are. Rather than facing the harsh reality of their own limitations, they 'pretend.'

In a game where a boy has convinced himself that he's the greatest slugger of all time, “striking out” in the middle of his fantasy can bring on a collapse of his exaggerated sense of self, leaving him confused and uncertain. Losing, then, at anything from T-ball to Go Fish, may have less to do with the game itself and more to do with the sudden unpleasant reversal of expectations and emotions, which are on a bit of a hair trigger anyway.

Expect your child to be unhappy with losing – and realize that each time he does, he is developing emotional muscles that he would not be developing otherwise.

The Aspergers Comprehensive Handbook

ASD: Difficulty Identifying and Interpreting Emotional Signals in Others

Autism spectrum disorder (ASD) is a complex neurodevelopmental condition that affects an individual's ability to communicate, interact w...