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How To Help Other Family Members Accept Your Child's Diagnosis

"I'm a stay-at-home mom. My husband works out of town and is only home on weekends. My question is how can I get my husband and in-laws to accept our daughter’s diagnosis (high functioning autism)? They claim I am just 'making this up' and that it's really a behavior problem with her – not a 'disorder'."

This is not surprising, and you're not alone. High-Functioning Autism (HFA) and Asperger's (AS) is hard to see if you don’t live with it every day like you do. Also, some family members are simply in denial. Either way, the truth should come out.

Accepting the presence of this high functioning form of autism can lead to the best possible support and treatment available for your daughter. It’s crucial that all family members are on the same page. You could survive handling everything on your own, but life will be much easier for the whole family when everyone is working together to care for your daughter.

Some family members will choose to stand on the outside. You can’t do much about that. Nonetheless, you can equip them with information about autism spectrum disorders so they can make a choice regarding the position they plan to take.

Here are some tips on how to accomplish this:
1. Contact your local Autism support groups. Without family support, it is crucial that you find encouragement elsewhere. Tell your husband about community events or group meetings so he has the opportunity to stay informed.

2. Find books, eBooks, videos, and other media sources that you can share with your family. A great place to start is with one of the resources listed below this post.

3. If you haven’t done so already, involve your daughter in therapy with a professional who works with children on the autism spectrum. Hopefully, your daughter’s therapist will offer parent-training sessions. These sessions allow you to ask questions about your daughter’s program and her progress, while also educating you on her new goals and coaching you on how to meet these goals. Invite your husband and in-laws to attend this parent training. They can ask questions that will help them understand your daughter’s disorder.

4. Network with other parents raising children on the spectrum. Listening to the stories of those parents who are ahead of you in the journey can give you and your husband insight into the disorder. Here are our two Facebook support groups:

5. Maybe your in-laws simply need to hear the truth from a doctor. Official paperwork containing your daughter’s diagnosis is available from your doctor, neurologist, or therapist. You can request copies of any Early Intervention assessments, private therapy evaluations, and school system evaluations. Explain to your in-laws that these individuals are professionals who see autism spectrum disorders every day. You can also mention that the assessments and evaluations rely on much more than your input, removing any possibility that you are “making this up.”

6.Lastly, get the support you need to help yourself and your daughter. Try not to worry about how the other family members are dealing with this. Always encourage their participation, but concentrate on your daughter’s needs.

Highly Acclaimed Parenting Programs Offered by Online Parent Support, LLC:

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

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism

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Do you need the advice of a professional who specializes in parenting children and teens with Autism Spectrum Disorders?  Sign-up for Online Parent Coaching today.


PARENTS' COMMENTS:

Anonymous said…  I think the acknowledgment is there, the trouble is, most people do not know the true difficulties and how it effects everyday life Every day is a struggle and every day brings new challenges. People who are not with your child day in and day out may think it is not a big deal and is easy... it is NOT. Also, that Aspies cannot be disciplined and treated the same as average children to get results.

Anonymous said…  From my personal experience, my son's Aspergers was not as apparent in the home setting in isolation from his peers. Once I saw him at school and noticed the stark difference between him and the other kids and how he did or did not interact with them it was much more obvious. Family members don't always get to see that, so it can be harder to make believers out of them.

Anonymous said…  My sister, who also has a degree in education, babysat my son along with his same aged cousin when they were both 2. She also taught a couple days per week at a Mother's Day Out day care setting. She noticed that my son was very different and often kept him with her because some of the other teachers were less able to handle him. Though my son is good at heart, his bad social judgment often resulted in issues at school each year. It was very frustrating! So when an insightful teacher recommended testing for him in 4th grade, resulting in the diagnosis, we finally had an explanation that made perfect sense to all of us! And I felt better about the future because his teachers could now better understand him instead of writing him off at just "passive aggressive" or simply "difficult." I think if people realize that a diagnosis can yield better understanding and teacher training gives teachers tools for better working with kids, then family can feel better about the child's prognosis and outcome.

* Anonymous said...  Love these articles. A lot of us deal with things similar. This is definitely something that happens with this diagnosis. Even I as the parent of a kiddo that has these tendencies, sometimes would question whether it was just a "behavior problem" or not...whether it was my parenting style or not. If you aren't with the child 24/7, you don't see the whole picture at all. Being education is so important. When one is educated on this particular diagnosis...so much falls into place. 

* Anonymous said... i am now a single-mom to one ASD son & one non_ASD daughter. I lived out of state for 3 years. I couldnt wait to get back hom with my kiddos (& then husband). But noone welcomed us....not even my own mother (this was before the autism diagnosis). Even after, no one wanted to learn about it...we were just too much inconvience for their lives. I also kicked my husband out for various reasons....but "failure to understand autism" was a big one. It's a lonely life. Me & my 2 kids usually stay home & do the same routine everyday. I try to avoid public...because no one understands, & i dont want my children hurt :o( i'm from a state who fears "different people"...i've always been alternative myself. But, God, if you can at least help your husband "get free" & love you all like you are..that would be awesome for you guys. Who cares what in-laws (or even your own folks think!) let them learn! Or stay away. The world needs to be more open-minded not in "words at church" or "words on social media"
 
•    Anonymous said… I had this a lot with some friends & family and what I did was sent them a link to the National Autistic Societies website and asked them out of Respect to please read it, take it in and that the very fact they are choosing not to Learn more and accept our child for the way he/she is - hurts us more than our child's Diagnosis! Some really made the effort to read more and some didn't bother! This is very common and I have to be honest and say I chose to close the door on those that would not accept my son for who he is! You are not alone! Keep your head up and just always put your child before others
 
•    Anonymous said… Thankfully most people in my life are accepting and understanding, but I have this problem with my sons father... He refuses it completely, and during the long process of getting a diagnosis of Aspergers, he tried to make me stop taking our son to the appointments completely. I would like to say things are getting easier, but since my sons diagnosis, his father and I have actually split up, after 22 years together, and sadly this was one of our major issues that caused it. It's exhausting.. It's all on my shoulders.. I work day after day with my son..And then he goes and spends a weekend with his Dad and comes back to me in turmoil because his Dad refuses to learn how to properly deal with a child with Aspergers. I've tried everything to get him to face reality unsure emoticon I think there are some people who will just never get it..
 
•    Anonymous said… Unfortunately a lot of the symptoms are typical of "normal" kids but when you add them all together they spell Aspergers. I think this website has a concise list that might help those who don't want to read much. My son pretty much had all the symptoms but most of them were fairly mild. Had we not had him in a daycare setting where his caretakers would notice his interactions, we may have just written him off as quirky. Early intervention is the key. He is now seven and was diagnosed between 2 and 3 and it's made a HUGE difference. He has "outgrown" most of his issues but still has social problems to a degree. 
 

*   Anonymous said... My parents and siblings clearly think my kid's diagnosis is bogus (they haven't said in so many words, but keep hinting at it). It used to annoy me, but I actually don't care; they love and appreciate him as he is, quirks and all; so I don't feel the need to shove a diagnosis down their throats. 

Post your comment below...

The connection between Semantic Pragmatic Disorder and Aspergers Syndrome

Has anyone found any direct combination of Aspergers Syndrome and Specific Learning Disability? Have a small girl of 5 yrs who displays these traits.

Aspergers may be associated with learning difficulties and attention deficit disorder. Indeed, many kids and teens with Aspergers have previously been diagnosed with AD/HD instead of Aspergers. Children with AD/HD may have difficulty with social interaction, but the primary difficulties are inattention, hyperactivity and impulsivity. In children with Aspergers, the social awkwardness is a greater concern. As kids with Aspergers enter adolescence, they become acutely aware of their differences. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.

Also, what is the connection between Semantic Pragmatic Disorder and Aspergers Syndrome??


==> First, we'll look at SPG...

Semantic Pragmatic Disorder—

HISTORY—

Semantic-Pragmatic Disorder was originally defined in the literature on Language Disorder in 1983, by Rapin and Allen, although at that time it was classified as a syndrome. They referred to a group of kids who presented with mild Autistic features and specific semantic pragmatic language problems.

In babyhood, moms & dads often described them as model babies or by contrast babies who seemed to cry too much. Many of these kids babbled little or very late and went on using 'jargon' speech much longer than other kids of the same age. Their first words were late and learning language was a hard slog. Some had other speech disorders too. Problems were usually first identified between 18 months and 2 years when the youngster had few if any real words.

Many moms & dads wondered if their kids were deaf at first because they did not appear to respond to speech. Assessment found that most kids had good hearing, although some did have otitis media and had grommets fitted to ensure maximum hearing.

The problem usually proved to be one of listening and processing the meaning of language instead. Many of the kids ignored their names early on but would hear the telephone or the door bell and even respond to the rustle of a sweet paper. Early on in their lives, Semantic-Pragmatic Disordered kids were found to have comprehension problems finding it difficult to follow instructions which were not part of the normal routine. Comprehension problems usually improved or responded well to speech therapy so that by the age of four years, many of the kids appeared to be functioning superficially, very well.

By the time these kids reached school, staff and moms & dads were aware that there was something "different" about them, but they couldn't quite put their finger on it. Sometimes the kids would appear to follow very little conversation, while at other times they could give a detailed explanation of an event. Later on in school they were often good at math, science, and computers but had great difficulty in writing a coherent sentence or playing with other kids. They were also unable to share and take turns. They could appear aggressive, selfish, bossy, over confident, shy or withdrawn. Many, therefore, were singled out as behavior problems and subjected to behavioral regimes which did not always work and left the youngster confused about what he was supposed to be doing. As one 6 year old Semantic-Pragmatic Disordered youngster said to his mother, "I don't want to be naughty".

Current Thinking—

Today we have a better understanding of the Disorder. We know that Semantic-Pragmatic Disordered kids have many more problems than just speaking and understanding words, so we call it a communication disorder rather than a language disorder. We think that the difficulty for kids with SEMANTIC PRAGMATIC DISORDER may be in the way they process information. Kids with SEMANTIC PRAGMATIC DISORDER find it more difficult to extract the central meaning or the saliency of an event. They tend to focus on detail instead; for example the sort of youngster who finds the duck hidden in the picture but fails to grasp the situation or story in the picture or the youngster who points out the spot on your face before saying 'hello'.

Extracting information from around us is something we do all the time. We are always looking for similarities and differences so that we can understand and anticipate. Kids who find it difficult to extract any kind of meaning will find it even more difficult to generalize and grasp the meaning of new situations. They will therefore cling on to keeping events the same and predictable. Maintaining sameness, by following routines slavishly, insisting on eating certain foods or wearing particular articles of clothing or developing obsessional interests are all characteristics of kids with SEMANTIC PRAGMATIC DISORDER Because these kids have difficulty extracting meaning both aurally and visually, the more stimulating the environment becomes the more difficult they find extracting information. Because people have minds which allow them to behave independently they are much less predictable and more difficult to understand than objects or machines. Kids with SEMANTIC PRAGMATIC DISORDER are often more sociable with friends at home or in a formal 1:1 assessment situation than in a busy classroom. Carers may be puzzled by the apparent discrepancy.

Listening and Understanding Language—

Because kids with SEMANTIC PRAGMATIC DISORDER find it difficult to focus their listening, they are easily distracted by noises outside the classroom or someone talking on the other side of the room. They may butt in on conversations which have nothing to do with them. They are often described by staff as inattentive or impulsive. They may find loud noise in the classroom distressing and may comment on this. Sometimes when kids with SEMANTIC PRAGMATIC DISORDER are trying very hard to concentrate they may not hear speech at all and ignore general instructions in the classroom while they are trying to work. Many class teachers say they sometimes have to stand in front of their kids with SEMANTIC PRAGMATIC DISORDER or touch them before they respond.

Although many kids with SEMANTIC PRAGMATIC DISORDER do very well; sometimes way above their age level on formal language assessments, this does not mean that they do not have comprehension difficulties. What it does mean is that our methods of testing are not tapping the right areas, or the ones we are using are not standardized yet.

Their difficulties in understanding language are usually fairly subtle by the time they are 5. Kids with SEMANTIC PRAGMATIC DISORDER can often respond to long instructions like, "put the blue pen under the big book", because the objects are there, because it is here and now in time, and because bright kids with SEMANTIC PRAGMATIC DISORDER usually have very little difficulty in understanding visible concepts like size, shape and color and can be well ahead of their peers. The other very important point is this kind of language does not require knowledge about the person giving the instruction.

Kids with SEMANTIC PRAGMATIC DISORDER would find comments and questions like "Where did you come from then?,.. What are you doing later?" "That was very clever of you!", much more difficult. This language requires more than listening and understanding words. You need to understand what the speaker was thinking and intending. You need to understand non literal expressions and time concepts too.

SEMANTIC PRAGMATIC DISORDER kid’s understanding usually breaks down in a busy classroom when the teacher starts to chat, tell jokes, or makes a few sarcastic remarks. Kids with SEMANTIC PRAGMATIC DISORDER often feel very uncomfortable at this point because they take everything literally. If other kids become aware of this, they can learn to tease and take advantage.

Because kids with SEMANTIC PRAGMATIC DISORDER have difficulty in understanding what other people are thinking when they are talking, they cannot understand when people are lying or deceiving them. Many moms & dads of kids with SEMANTIC PRAGMATIC DISORDER have reported to us that their kids have had their lunches taken off them or parted with pocket money and returned home unable to give a clear account of what happened.

Talking—

As well as subtle comprehension problems kids with SEMANTIC PRAGMATIC DISORDER have difficulties with talking too. These are not always picked up by moms & dads or staff because so often they chat fluently. It is the particular way in which they use language which identifies them as a group. That is, they have specific Pragmatic Difficulties.

Kids with SEMANTIC PRAGMATIC DISORDER have a different style of learning language; they seem to learn more by memorizing than knowing what the individual words really mean; so they cannot use language with the same range and flexibility as other kids. Kids with SEMANTIC PRAGMATIC DISORDER remember whole chunks of adult phrases and because they are not sure which bits are more important than others they learn everything accurately including the intonation and the accent of the speaker! Sometimes you can hear yourself talking. All in all they seem to say a lot more than they really understand. Some kids with SEMANTIC PRAGMATIC DISORDER use a flat or 'sing-songy' voice when they are echoing other people's language.

Kids with SEMANTIC PRAGMATIC DISORDER often remember to use this echoed language appropriately so they can sound very grown up which contrasts dramatically with their social immaturity. However, when you ask them to give you an account of an event or discuss a picture story which they have not rehearsed, you find them groping for original words and the whole account is very disjointed. One mum described how her son of 5 would tell everyone off in his class including the teacher using her words but could never explain what he had done at school or ask the teacher for help.

When you analyze the content of a SEMANTIC PRAGMATIC DISORDER youngster's speech, you find a disappropriate amount of echoed social phrases and very little about how people feel or think. SEMANTIC PRAGMATIC DISORDER kid’s delayed social development means that they do not make distinctions between people. Adults, kids, teachers and moms & dads are treated the same so when Adam said "don't talk to me like that" to a visitor, he was understandably thought to be very rude, when in fact he was simply repeating what had been said to him. SEMANTIC PRAGMATIC DISORDER kid’s inappropriate or immature use of language can be very embarrassing. They say things like, "why has that lady got such a big nose", or they give the family secret away to the very person you had intended it to be kept from. It is easy to see why adults find kids with SEMANTIC PRAGMATIC DISORDER so exasperating at times.

Problems with talking really show up at a conversational level for kids with SEMANTIC PRAGMATIC DISORDER First of all their delayed social development means that like younger kids, they are much more interested in themselves than other people so they tend to choose topics about themselves, their family or their special interests. Because they have insufficient understanding of their conversational partner, they tend not to understand that she might not be interested in their latest obsession and because the SEMANTIC PRAGMATIC DISORDER youngster has no idea what is pertinent in his story and what is not, when he is able to describe past events, he tends to give an over detailed account and fails to read the signals of boredom in his listener. He may, on the other hand believe that his listening partner shares his thoughts exactly. He thus assumes common knowledge and fails to put his partner sufficiently in the picture and requests for information may bring one word answers only.

On top of these problems so far described, the SEMANTIC PRAGMATIC DISORDER youngster may misunderstand what his conversation partner intended so he may give rather bizarre answers or he may, if he is skilful enough, change the topic and gear it back to what he understands and keep talking just to shut his partner out. Conversation can take on very strange meanings, if you are not aware of the SEMANTIC PRAGMATIC DISORDER youngster's difficulty.

Understanding how others think—

Some S.P.D kids become skilled at talking about pictures or sequences of pictures but you find them only able to give you the bare facts. Their inability to describe people's thoughts and intentions within the picture mean they cannot be creative or abstract in their account or they cannot infer or make sensible predictions. They cling to the observable features of the picture without dealing with the implied underlying meaning.

The SEMANTIC PRAGMATIC DISORDER youngster's difficulty in seeing the world through other people's eyes or understanding that other people think differently from himself, is often described as a youngster who does not have a 'theory of mind'.

There has been a lot of research recently into when kids develop a 'theory of mind'. Researchers have used false belief stories and deception tasks (which tests the youngster's ability to understand that people who do not share the same knowledge will behave differently) to determine when kids develop this skill. Researchers think that four year olds have quite good understanding of minds but that kids on the Autistic Continuum * find this more difficult.

Most 'core' Autistic kids never acquire a complex theory of mind where as SEMANTIC PRAGMATIC DISORDER do seem to but later than other skills at the same developmental stage. This lack of social 'nous' above all else makes life difficult for the SEMANTIC PRAGMATIC DISORDER youngster. They find it difficult to make friends with kids of their own age and tend to gravitate towards younger or much older kids unless of course there are other kids with SEMANTIC PRAGMATIC DISORDER in the class - when they seem to be attracted to each other like magnets. We think that kids with SEMANTIC PRAGMATIC DISORDER need to spend time together so they can feel on a par with each other and not constantly at the mercy of more sophisticated peers.

We think teachers should explain to other kids, in simple terms, why it is the SEMANTIC PRAGMATIC DISORDER youngster cannot conform and to keep an eye on his vulnerability both inside and outside of the classroom.

Creative Play—

Researchers have also suggested that the difficulty kids with SEMANTIC PRAGMATIC DISORDER have in playing creatively and in mentalizing has a common cognitive origin. The ability to separate one’s own thinking from that of another person may start at birth and develop through simple turn taking and shared attention games. Even breast feeding, humpty dumpty or peek-a-boo requires turn taking and mentalizing.

At about 18 months, kids take a leap forward in their mentalizing, they are able to think even more abstractly and they can switch from abstract to concrete thinking very easily. For example, they can pretend a toy cup is a telephone, but they also understand that the toy cup is a cup.

Toddlers' teddies take on extra meanings when they become people who are taken to bed, fed and even used to fight kid’s battles for them. Three year olds know how to switch from pretend to reality and develop story lines with their friends when they say, "Let’s pretend you are .....".

Kids with SEMANTIC PRAGMATIC DISORDER, on the other hand, find this kind of abstract thinking much more difficult. This makes their play less creative so that a tower of bricks is always a tower of bricks until someone else tells him otherwise. Kids with SEMANTIC PRAGMATIC DISORDER tend to flit from toy to toy or play repetitively. They show more interest in real activities like water, motor play, operating machines, tidying up and stacking toys. Many kids with SEMANTIC PRAGMATIC DISORDER understand representation i.e. that a toy cup stands for a real cup and they will often perform the appropriate action on the toy. They are not however pretending. The youngster who is really pretending is taking on the role of someone else and using their persona to develop a story line.

Many bright kids with SEMANTIC PRAGMATIC DISORDER try to solve the mystery of pretence by copying other peoples' pretence or copying moms & dads actions in the same detailed way they copy their speech. Some kids with SEMANTIC PRAGMATIC DISORDER copy exerts from TV programs exactly, and some people actually think kids with SEMANTIC PRAGMATIC DISORDER are being creative when in fact they are simply copying in detail. We call this kind of play functional play. This inability to separate pretence from reality can pose problems for some kids watching t.v. Although most kids with SEMANTIC PRAGMATIC DISORDER prefer cartoon programs, many, as they mature, enjoy films too. We would suggest that as far as possible you limit access to programs which contain violence and that you explain what is real and what is not.

This inability to be creative is usually extended to drawing skills too. Many kids with SEMANTIC PRAGMATIC DISORDER are late acquiring representational drawing skills. Many have to be taught how to draw a face and they can only repeat it in a particular way. Some kids with SEMANTIC PRAGMATIC DISORDER will only copy draw and some will only draw objects related to their obsessional interests. One youngster we knew would only draw pyramids, another drew horses. Very few, except the most able, can draw a picture story which is not the same each time.

Motor Difficulties—

Some kids with SEMANTIC PRAGMATIC DISORDER have fine motor difficulties. They find handwriting very difficult. They often need specialized help in making the correct letter shapes.

Some kids with SEMANTIC PRAGMATIC DISORDER have mild gross motor difficulties too, not always noticed early on except they are sometimes described as walking with an 'odd gait'. They are late riding bikes, find gym work difficult and take little interest in rule based games like football. Perceptual difficulties too can interfere with performance on practical skills, e.g. the sort of youngster who tells you how to prepare a 3 course meal but cannot put the beans on the toast.

Memory Skills—

Many bright kids with SEMANTIC PRAGMATIC DISORDER have exceptional memory skills which compensate for their communication problems. Many have a detailed memory for past events which other members of the family have long forgotten. Most have a detailed memory for social phrases as mentioned. Many have a memory for routes and can direct moms & dads long distances by car! Some have an excellent memory for reading, others remember tunes.

Academic Performance—

In the classroom, academic performance tends to be patchy. First of all, the SEMANTIC PRAGMATIC DISORDER youngster's egocentricity means that he can only understand topic work from his own perspective. Refusing to do work may signal the work has no meaning for him and may suggest to the teacher and moms & dads that they need to supplement class work with more concrete shared experience. Kids with SEMANTIC PRAGMATIC DISORDER often have excellent number concepts and teachers and moms & dads are puzzled by the youngster's slowness in grasping how to do 'sums'. It seems they find the abstract symbols of adding + and subtracting - rather meaningless unless they are allowed to make their own. Later on, they often fail to understand the value of money or tell analogue time - unless of course either one happens to be an obsessional interest.

We think these difficulties can be remediated if addressed early on. Kids with SEMANTIC PRAGMATIC DISORDER usually manage fairly well during infant classes and it is often not until junior level, when help has not been available that obstacles seem to be met. At junior level, the major problems are handwriting and creative writing.

We would suggest that if handwriting is still unintelligible at nine years, there is little point in persisting with further handwriting practice and that it may be more sensible to encourage development of written skills through the use of word processors.

Creative writing, rather like pretend play, is something which may remain inflexible. Many kids with SEMANTIC PRAGMATIC DISORDER find it easier to regurgitate their own experiences or retell stories. One youngster we know is so accomplished at memorizing stories and interweaving them into new ones that he has actually won prizes for creative writing!

Some kids with SEMANTIC PRAGMATIC DISORDER learn to read very early but not necessarily with understanding. We call this hyperlexia. Other kids find reading and writing a hard slog and we call this dyslexia. As yet we cannot predict which kids will fall into which group.

SEMANTIC PRAGMATIC DISORDER is therefore a complex disorder not yet fully understood. Except we now know that most of the problems experienced by these kids have something to do with abstract thinking and mentalizing; but just like any group of kids, they are all different. They have their individual personality and their individual abilities, which mean they have individual needs.

School Placements—

Some kids have moderate learning difficulties on top of their SEMANTIC PRAGMATIC DISORDER problems and do best in special schools, but many kids are brighter than average and can do very well in mainstream education; particularly if they have the support of a helper or spend time in a language unit or a language school. We think that as our understanding of the disorder improves then we shall be able to provide an educational environment which best meets their needs.

For bright kids with SEMANTIC PRAGMATIC DISORDER, we think that the most important question is, "What is it that makes the SEMANTIC PRAGMATIC DISORDER youngster unique?" He has a different style of learning which is equally valid but it does necessitate a special understanding and a different approach. If we are to maintain his self esteem and reduce his anxiety to levels that allow him to learn, then we should perhaps start from the premise of what can this youngster do, rather than what can't he do.

With a clear understanding of his skills and his needs, our expectations should become more realistic and our interventions less punitive. The SEMANTIC PRAGMATIC DISORDER youngster may not show embarrassment when he has violated a class social rule but he will feel a failure if he is saturated with labels of 'naughty', 'silly' and 'no common sense'. He simply needs to know what is acceptable and what is unacceptable.

Bright kids with SEMANTIC PRAGMATIC DISORDER are usually very quick at picking up rules if they are spelt out and will stick to them much more slavishly than the rest of the class. The secret of good teaching is perhaps to anticipate when these rules may need revision. Kids with SEMANTIC PRAGMATIC DISORDER often perform best in small, orderly 'old fashioned' styled classrooms.

Growing Up—

We haven't followed any of language unit kids with SEMANTIC PRAGMATIC DISORDER into adulthood yet, but we do know that the kids whose problems have been identified early and whose behavior and communication problems have been recognized as part of the learning disorder tend to integrate best at least up to senior level. Some kids have managed the transition to senior school well and one we expect to go to university. Other kids however bright would simply be too vulnerable to cope socially at comprehensive school even though much of the academic work would be within their scope. We hope that in time some specialist facility may be offered locally at senior school for those who need it.

What we are sure of at this stage, is that kids with SEMANTIC PRAGMATIC DISORDER do have problems recognizing what is sociably acceptable and unacceptable and that they should not be educated with kids whose primary diagnosis is E.D.B (Emotional Disturbed Behavior). We believe that SEMANTIC PRAGMATIC DISORDER kid’s behavior problems escalate in the presence of conduct disorders.

We have also found that some kids with SEMANTIC PRAGMATIC DISORDER who find it difficult to cope in a busy mainstream class are out performed by similar kids in special school, particularly if there is high Speech Therapy input and if the school has a genuine interest in developing a service for kids with Semantic Pragmatic Difficulties.

Echoed speech, comprehension problems and refusal to co-operate are all behaviors minimized in the appropriate setting.

Kids with SEMANTIC PRAGMATIC DISORDER will probably benefit most from an adapted curriculum where teachers and speech therapists work alongside each other to provide an integrated academic and communication program.

Kids with SEMANTIC PRAGMATIC DISORDER often do well if they spend time with kids who are equally or less socially sophisticated than themselves. They need social peers as well as intellectual ones. Kids who will encourage or insist on interaction rather than kids who ignore.

Kids with SEMANTIC PRAGMATIC DISORDER need extra talking practice, not less. With help, kids with SEMANTIC PRAGMATIC DISORDER will overcome most of their language comprehension problems but if their conversation is to be timely and appropriate they need to 'know' who their conversational partner is.

Autistic Continuum—

This phrase refers to all kids who share the same specific cognitive deficit resulting in problems with sociability, language and pretence. At the severe end of the continuum, we have kids labeled as Autistic, Core Autistic or Classically Autistic.

At the other end of the continuum, we have kids with milder problems who may have diagnostic labels of Semantic-Pragmatic Disorder or Autistic Spectrum Disorders.

Autistic Spectrum Disorders—

This recently adopted phrase refers to kids who fall some way between normality and Autism but outside Core Autism. Labels like Atypical Autism, Aspergers Syndrome, or Semantic-Pragmatic disorder are often used and they all describe similar communication difficulties to a greater or lesser degree. All kids on the Autistic Continuum including those with Core Autism have Semantic-Pragmatic difficulties with language and they should all be viewed in the context of Autism. That is they share the same triad of difficulties, with sociability, pretence and language.

Kids with SEMANTIC PRAGMATIC DISORDER are the group who are sociably the most able but who have much more difficulty early on at least learning basic language skills. But whose difficulties we suspect in adulthood will blur into the realms of mild eccentricity.

Kids with Aspergers Syndrome tend to have more problems with socializing than kids with Semantic Pragmatic Disorder but are generally earlier fluent speakers. There seems to be a pay off between early comprehension skills and sociability. As kids mature, it is often difficult to specify what label best fits. Many kids improve dramatically and diagnostic labels can change.

Labeling or not—

There is an argument, at least in the early years, particularly for more able kids, to use less specific diagnostic labels like Autism and simply to describe kids who may well improve dramatically in the pre-school years as falling within the 'Autistic Continuum' or as having an Autistic Spectrum Disorder.

Specific labels, however, can be useful, at the school stage of development both for research and for planning resources. There is clearly an enormous difference between a youngster with severe learning difficulties and Autism and a youngster of superior intelligence with a Semantic-Pragmatic Disorder. When we are describing kids on the Autistic Continuum, we must also be clear in our own minds about whether we are simply describing levels of sociability or whether we are also describing more generalized learning difficulty. The two do not necessarily go hand in hand.

As a rule of thumb, however, kids with Semantic Pragmatic Disorders as a group have less generalized learning difficulties than Autistic Kids.

Origins of Semantic-Pragmatic Difficulty—

We now think there is a family link between these Autistic Spectrum Disorders. We have sometimes found that having identified one youngster on the Autistic Continuum, another youngster in the family has been found to have milder communication problems too, particularly if they are male.

Moms & dads ask why? Well as you have probably deduced, the evidence is now pointing to a disorder which is genetic in origin. Autistic Spectrum Disorders are sometimes associated with other genetic disorders like Fragile X Syndrome, Retts Syndrome and Tuberousclerosis.

We think the problem is much more complex than one parent passing on a problem. Just like two hearing moms & dads can produce a profoundly deaf youngster, we think that two healthy moms & dads can produce a youngster with a communication disorder.

Some moms & dads of kids with SEMANTIC PRAGMATIC DISORDER describe eccentric relatives or others with psychiatric illness, but this is by no means always the case. We still have much to learn about genes and inheritance. What we can say is, boys are much more likely to have communication problems than girls: something in the ratio of 6:1.

Some moms & dads describe difficult birth histories and wonder if brain damage at birth could have been responsible. Well it is possible, but unlikely that a brain injury could be so specific. We think that in the majority of cases, the genetic makeup of the youngster makes him more vulnerable at birth.

If the same partners are contemplating extending their families after discovering they have a youngster with Autism and Semantic-Pragmatic Difficulties, we would recommend they sought Genetic counseling first.

Prognosis—

Semantic-Pragmatic Disorder is not an illness like Diabetes. It is a developmental disorder which improves with age. Rates of progress are probably dependent on overall intelligence and the support of carers. At centers like Heathlands, carers hope to maximize on such improvement by providing support and guidance throughout childhood.

Until about 10 years ago, we were only able to recognize the most handicapped kids with Autism. Kids were either Autistic or they were not Autistic. This meant that many able kids on the continuum with very mild and specific learning difficulties were excluded from a diagnosis and subsequent help. Many were dismissed as eccentric or language disordered or as having behavior problems, leaving moms & dads with much unresolved guilt.

Today we have extended the boundaries to include those kids with only mild social difficulties, some of whom may be able to extend their special interest and abilities to outperform their peers in mainstream.

The gloomy picture of Autism and Mental Handicap once painted is not something that necessarily follows. If you are a parent and you have been given this article to read, you should feel reasonably optimistic.

TELL TALE SIGNS—

(These are the features we have observed in many of our kids but not all in one youngster!)

Early Developmental 0-2 years:

1. "Golden" baby
2. A loner.
3. Didn't always look at you properly or enough when talking to you.
4. Didn't babble much.
5. Didn't take teddy to bed.
6. Difficult toddler with no sense of danger.
7. Fussy eater
8. Inappropriate response to sensory stimuli (e.g. touching, pain, noise)
9. Late pointing to share knowledge.
10. Late recognizing himself in a mirror or in a photograph.
11. Late talking
12. No boundaries.
13. Not interested in baby games.
14. Over clingy or wandered off too easily.
15. Thought he was deaf.

Nursery age development 2-4 years:

1. Appears to have a receptive language disorder.
2. Better conversation at home than at school.
3. Cannot play or negotiate with other kids
4. Cannot share.
5. Can't initiate pretend games with other kids.
6. Difficulty cutting out.
7. Doesn't build much with lego or tends to build the same.
8. Echoes people’s conversations, stories and t.v. programs.
9. Good at jigsaws, colors, numbers, shapes.
10. Has to be prompted to use social greetings like 'hello' and 'goodbye'.
11. Late drawing representationally. Prefers scribble if left.
12. Loves music and has a good memory for tunes
13. Never asks for help - too independent.
14. Obsessional interests like cars, dinosaurs and Michael Jackson!
15. Only interacts at a rough and tumble or chase level.
16. Only watches cartoon t.v. or animal programs
17. Prefers 'helping' with real activities like operating machinery or washing up.
18. Prefers to 'read' his own story (usually Thomas the Tank Engine).
19. Pretend is only action on object and doesn't have a storyline.
20. Rarely dresses up.
21. Tantrums persisting.
22. Very active - doesn't settle to play for long.
23. Wouldn't settle at playgroup and had to be removed.

School Age development:

1. Appears rude or can say things that embarrass you.
2. Approaches people inappropriately by kissing them or wrapping his arm around them or standing too close.
3. Cannot cope in crowds like assembly or parties.
4. Can't follow topic work in the classroom.
5. Can't get his ideas on paper.
6. Can't tell you what he did at school without shared knowledge.
7. Difficulty coping with school dinners (e.g. food fads, slow eater, surrounding noise, conversational expectations).
8. Distractible in the classroom.
9. Does not see himself as a member of a group.
10. Doesn't ask the teacher for help.
11. Doesn't exchange eye contact or facial expression appropriately.
12. Doesn't like football or complex rule based games.
13. Doesn't really follow the storyline of a book.
14. Doesn't take turns in conversation.
15. Doesn't understand abstract concepts like: tomorrow, next week, guess, wish.
16. Doesn't use much gesture like shrugging shoulders.
17. Excellent number concepts but difficulty with + or - or telling the time or value of money.
18. Fluent speaker but only wants to talk about things important to him.
19. Follows his own interests rather than the class.
20. Follows rules slavishly, and expects everyone else too.
21. Good memory for places and events.
22. Has no special friend but dominates some kids or plays on his own.
23. Has to be told how to behave.
24. Late reader or 'super' reader.
25. Literal understanding doesn't know when you are being sarcastic or joking.
26. Naive and unable to see deception in others.
27. Obsessional questioning. Answers don't satisfy him.
28. Poor handwriting
29. Seems much more childish for his age than his intelligence would suggest.
30. Sounds like a grown up sometimes.
31. Under performing at school.

Summarizing Difficulties—

Social/Emotional Delay and Disorder:

• Approaches kids and adults inappropriately.
• Childish.
• Demands a lot of adult attention.
• Difficulty making friends of his own age.
• Does not understand status.
• Doesn't recognize the difference between good and bad behavior unless told.
• Doesn't understand other people’s intentions.
• Egocentric.
• Feels bad about himself if he makes a mistake but doesn't feel embarrassment.
• Little empathy
• Naive

Language Disorder:

• Confuses he/she
• Conversation can sound too grown up or rude.
• Difficulty establishing shared attention and joint reference.
• Disproportional early vocabulary of nouns to verbs.
• Doesn't initiate conversation appropriately.
• Doesn't use language sociably and tends not to bother about social greetings.
• Early listening and comprehension problems.
• Easily distracted.
• Late talking and late pointing reverentially.
• Later on few words to describe thoughts, feelings and intentions of others.
• May have other language problems like fluency or speech disorder.
• Not interested in or able to follow topics outside his own experience.
• Over uses social phrases or non-specific pronouns e.g. 'over there'.
• Poor Auditory discrimination so he may misuse words e.g. 'cartoon' for 'carton'.
• Quiet baby.
• Single track attention in a busy room.
• Sometimes appears deaf.
• Talks nonstop about his own interests.
• Uses a flatter or exaggerated intonation pattern.
• Uses time labels incorrectly. Words like 'yesterday' can mean any period back in time.

Play skills:

• Can't share easily.
• Can't share pretence or develop story lines.
• Difficulty in following rules of games like tag, hide and seek or football.
• Finds it difficult to develop to and fro games with adults e.g. throwing and catching a ball. Hide and Seek.
• Good at lego and jigsaws.
• Likes playing on his own repetitively.
• Only plays chase or rough and tumble with other kids.
• Prefers real activities to pretend.
• Prefers self chosen activity and resists adult direction.
• Some anxiety about playing in the playground, particularly if there is no apparatus or objects to play with.

Academic Skills:

• Difficulties in playground. May result in anxious behavior just before break times with reappearance in classroom at playtimes.
• Difficulties with: handwriting, creative stories, reading comprehension, spelling and mathematical representation.
• Follows his own interests.
• Good at number, science and computers.
• Interprets topics from his own perspective.
• Only works when he wants to and appears to have no motivation for some work.
• Refuses to conform.

Motor Skills:

• Fine Motor Difficulties make practical skills like scissors, drawing, handicraft difficult.
• Gross Motor Difficulties makes riding bikes, swimming, dressing and rule based games like football difficult.

Sensory Difficulties:

• Many have a heightened awareness of smell or taste and may refuse certain foods. Others have a diminished awareness of hunger and may only eat if told.
• Some are late acquiring an interest in sensory exploration and continue to need this kind of play activity more than other kids of the same age and ability.
• Some avoid touching certain materials particularly sticky or wet substances.
• Some kids have a heightened awareness of loud noise. Others ignore loud noise and focus on peripheral sound.
• Some kids seem to have a diminished awareness of pain 'bravely' picking themselves up after serious accidents and only displaying signs of distress after observing the visible signs of hurt e.g. blood

Sameness:

This is not usually a major problem for kids with SEMANTIC PRAGMATIC DISORDER Overplaying with toys or over drawing are usually a sign of anxiety and that something in the environment needs changing - like a Speech and Language Therapist talking too much!

Over activity:

This is a feature shared by other kids with learning difficulties and may serve to confuse the diagnosis.

Initially, however, kids with Semantic-Pragmatic difficulties have very good concentration (sometimes too much) for self chosen activities like watching cartoon videos or playing with sand and water but become 'hyperactive' with more adult directed activity. Activity levels usually increase with complexity of tasks, complexity of environment, and expectations of failure. Over activity levels usually decrease with age and confidence but are hardly ever reduced by increased physical activity. Some moms & dads have found an association between food additives and levels of activity and while restricted diets do help, the problem is rarely solved this way.

Helping Kids with SEMANTIC PRAGMATIC DISORDER—

Social Development:

a. Provide a certain amount of predictability to reduce anxiety

b. Give a simple explanation to the other kids in the class (in mainstream).

c. Allow him to work in small groups or in a small class.

d. Facilitate his interactions with other kids. Do not allow him to opt out by holding your hand in the playground or dominating one youngster.

e. Give clear rules of how to behave without negative judgments. It is not healthy to be constantly told you are 'silly' or 'naughty'. When you do not know what it is you are doing wrong.

f. If he can't cope outside, give him special tidying or sorting jobs e.g. library.

g. If he hits out when thwarted, you may need to monitor him for a few days, if you want to stop this. While he may not be intentionally aggressive, he will not have sufficient empathy to know how hard to hit. His behavior could be a danger to other kids.

h. Encourage sharing, first by identifying his needs, secondly, by reflecting the other youngster's needs and thirdly by insisting he shares.

i. Make dinner time a pleasant experience. He may need an adult to sit with him.


Language:

a. Provide him with suitable conversation partners.

b. Give the youngster time to reply.

c. Acknowledge the youngsters communication even if it is inappropriately done and even if he cannot have his way.

d. Aim to teach him more appropriate strategies

e. Keep the class as orderly as possible with 'noise' to a minimum.

f. Make sure he knows what to do and what to do next.

g. If you want him to follow a general classroom instruction make sure you say his name.

h. Invite moms & dads into school on a weekly basis.

i. Talk slowly in simple sentences and do not bombard him with questions. When he asks a question make sure you are responding to his intentions rather than just the words otherwise you may be on the road to developing repetitive questioning in him.

j. If you want him to take a message home (however simple) write it down for him.

k. Use gesture or visual props when introducing new topics. Always work from shared practical experience first. This is a crucial element of teaching if knowledge is to be generalized and cannot be over emphasized.

l. Inform moms & dads which topics are being covered so they can supplement with extra hands on experience too.

m. Home school diary to help conversation and writing skills.

n. If his language doesn't make sense don't respond to what he says. Think of what he means to tell you. (his intentions)

o. Reflect what you think the youngster means when he echoes adult language, e.g. "I think it is getting awfully late", might mean "Adam is worried,. Adam doesn't understand". Hopefully this kind of comment if it matches the youngster's thinking will help him use the right words next time and reduce questioning.

p. If the youngster is involved in confrontation with another youngster, it is often helpful to reflect what the other youngster is thinking too, e.g. "Adam wants the pen". "David says it's mine".

q. Because kids with SEMANTIC PRAGMATIC DISORDER are so inflexible in thought, we suggest you tune into their thinking first. If you say what they are thinking first then the SEMANTIC PRAGMATIC DISORDER youngster is much more likely to listen. Then you can switch to what you want to say. Avoid dealing with situations by opening with a question:- e.g. "What's happening Peter?" is expressing your feelings and doesn't match what it is the youngster is thinking. Matching your words to the youngster's thoughts is called mapping. We think that mapping allows the youngster to build up a vocabulary of useful words which should have maximum meaning. If words have meaning then they should be used much more flexibly.

r. Over use specific vocabulary which youngster finds difficult. Pay particular attention to teaching opposites - e.g. he/she put/take upstairs/downstairs

s. Choose 2 or 3 words each week and ask moms & dads to do the same. Choose vocabulary from programs like living language particularly words of space, quantity, personal feelings and time.

t. Avoid sarcasm. Explain if you do.

u. Take care when you say "X is not good for you" (he may never eat it again!)

v. If you are doing 'news' work, encourage him to bring in visual props like pictures to help him talk about the 'there and then'.


Play skills:

a. Encourage sensory exploration and 'Wendy House' play

b. Help him vary his play, beyond set routines

c. Help youngster interact in playground.

d. Facilitate role play based on real life experience with props. e.g. reenact his birthday party or a trip to McDonalds using the empty cartons etc..

e. Help creative drawing and building - again based on real life visits and photos and video recordings.

f. Start group activities like story time or action rhymes with an activity he can do to hold his interest immediately.

g. Facilitate turn taking and anticipatory games through youngster centered play.

h. Encourage simple rule based games like hide and seek.


Academic Help:

a. Do not be deceived by his memory skills, make sure he 'understands'.

b. Use his visual skills and sense of order to develop understanding.

c. Extra help with correct letter formation.

d. Help him write sentences based on what the youngster has just done - with props e.g. written sequence of a practical activity.

e. If he has any obsessive or special interests, rather than ignoring them, it may be possible for him to develop them so he incorporates some useful knowledge.

f. Spelling rules - taught systematically.

g. Reading - help comprehension by reading the story to youngster first, and then discussing the text and asking him questions which require him to infer or predict but be prepared to give him the answers. Finally, ask the youngster to read the story to you.

h. Allow him to read some books above his comprehension level if he is hyperlexic so he feels as good as the other kids in the class.

i. If he is finding reading difficult, make him his own reading book with photographs based on himself and his family.

j. Exemption from topic work which may be too complex e.g. Religious or Historical projects. It may not be sensible for example to work on topics like the Romans if he does not understand what 'last week' means.


Math:

a. Help him translate mathematical problems like "If I have two sweets and you give me two more" into higher levels of representation e.g. 2+2 (make sure he understands the link).

b. Explain symbols + If these are difficult for him let him make his own and change them gradually.

c. Systematic help with 'time' based on school routine. Make sure you have a clock with numbers (one hand at a time).

d. Value of money (real money). Allow him pocket money as soon as he is old enough.

e. Make sure he understands the difference between words like:
• a few / a lot
• more / more than
• each / all / both
• how many / count
• 15 /50

f. If he is having problems with 'base 10' concepts. He may need to have special help with understanding concepts like eleven (one T. one) or twenty-three (two T. three) etc.

g. He may need extra help with estimating and measuring.


Self Esteem:

Find something he can do better than the rest of the group. If he can become the class artist or computer expert then he will gain the respect of his peers.


==> Next, we will look at Aspergers...

Aspergers Syndrome—

For years, psychiatrists have debated how to classify and subdivide the category of Pervasive Developmental Disorder (PDD). Pervasive Developmental Disorder is a category that contains several specific diagnoses. People with PDD have problems with the social interaction and often show delays in several other areas. These other areas may include language, coordination, imaginative activities, and intellectual functioning. The degree of severity can vary tremendously in the various forms of PDD. Autism is one of the more severe forms of PDD. An child with Autism has marked difficulty relating to other human beings. He or she frequently has delayed or absent speech and may be mentally retarded. Aspergers is on the milder end of PDD. People with Aspergers generally have normal intelligence and normal early language acquisition. However, they show difficulties with social interactions and non-verbal communications. They may also show perseverative or repetitive behaviors.

The Young Child: A preschool aged youngster might show difficulty understanding the basics of social interaction. He or she may have difficulty picking up social cues. He may want friends but be unable to make or keep any friends.

Elementary School Aged Child: One often hears the phrase, “poor pragmatic language skills.” This means that the child cannot use the right tone and volume of speech. He may stand too close or make poor eye contact. He may have trouble understanding age-appropriate humor and slang expressions. Many are clumsy and have visual-perceptual difficulties. Learning difficulties, subtle or severe, are common. The youngster may become fixated on a particular topic and bore others with frequent or repetitive talk even when the other Kids have given clear signals that they are no longer interested in the topic. Some have difficulties tolerating changes in their daily routine. Change must be introduced gradually.

The Adolescent: This may be the most difficult time for an child with Aspergers. Those with milder forms of the disorder may first come to treatment when they are in middle school. In adolescence, social demands become more complex. Subtle social nuances become important. Some may show an increase in oppositional or aggressive behavior. People with Aspergers have difficulty understanding which of their peers might want to be a friend. A socially marginal boy might try to date the most popular girl in his class. He will probably experience rejection. He is unaware that some other girl might accept his invitation. Because of his social naiveté, he may not realize when someone is trying to take advantage of him. He can be especially vulnerable to manipulation and peer pressure.

Adulthood: There is less information on Aspergers in adulthood. Some people with mild Aspergers are able to learn to compensate. They become indistinguishable from everyone else. They marry, hold a job and have Kids. Other people live an isolated existence with continuing severe difficulties in social and occupational functioning. People with Aspergers often do well in jobs that require technical skill but little social finesse. Some do well with predictable repetitive work. Others relish the challenge of intricate technical problem solving. I knew a man, now deceased, who had many of the characteristics of Aspergers. He lived with his mother and had few social contacts. When he visited relatives, he did not seem to understand how to integrate himself into their household routine. When the relatives would explain the situation to him, he was able to accept it. However, he was unable to generalize this to similar situations. Although he was a psychologist, his work involved technical advisory work, not face-to-face clinical sessions.

Associated Difficulties: Aspergers may be associated with learning difficulties and attention deficit disorder. Indeed, many Kids and teenagers with Aspergers have previously been diagnosed with AD/HD instead of Aspergers. People with AD/HD may have difficulty with social interaction, but the primary difficulties are inattention, hyperactivity and impulsivity. In people with Aspergers, the social awkwardness is a greater concern. As people with Aspergers enter adolescence, they become acutely aware of their differences. This may lead to depression and anxiety. The depression, if not treated, may persist into adulthood.

Treatment for Aspergers—

Medications: There is no one specific medication for Aspergers. Some are on no medication. In other cases, we treat specific target symptoms. One might use a stimulant for inattention and hyperactivity. An SSRI such as Paxil, Prozac or Zoloft might help with obsessions or perseveration. The SSRIs can also help associated depression and anxiety. In people with stereotyped movements, agitation and idiosyncratic thinking, we may use a low dose antipsychotic such as risperidone.

Social Skills Training: This is one of the most important facets of treatment for all age groups. I often tell moms & dads and teachers that the person needs to learn body language as an adult learns a foreign language. The person with Aspergersmust learn concrete rules for eye contact, social distance and the use of slang. Global empathy is difficult, but they can learn to look for specific signs that indicate another person’s emotional state. Social skills are often best practiced in a small group setting. Such groups serve more than one function. They give people a chance to learn and practice concrete rules of interpersonal engagement. They may also be a way for the participant to meet others like himself. People with Aspergers do best in groups with similar people. If the group consists of street-wise, antisocial peers, the Aspergers child may retreat into himself or be dominated by the other members.

Educational Interventions: Because Aspergers covers a wide range of ability levels the school must individualize programming for each student with Aspergers. Teachers need to be aware that the student may mumble or refuse to look him in the eye. Teachers should notify the student in advance about changers in the school routine. The student may need to have a safe place where he can retreat if he becomes over stimulated. It may be difficult to program for a very bright student with greater deficits. In one case, a student attended gifted classes but also had an aide to help her with interpersonal issues. That student is now in college. Kids with Aspergers are often socially naive. They may not do well in an Emotionally Disturbed class if most of the other students are aggressive, street-wise and manipulative. I have seen some do well when placed with other students with pervasive developmental disorders. Some do well in a regular classroom with extra support. This extra help might include an instructional assistant, resource room or extra training for the primary teacher.

Psychotherapy: People with Aspergers may have trouble with a therapist who insists that they make an early intense emotional contact. The therapist may need to proceed slowly and avoid more emotional intensity than the patient can handle. Concrete, behavioral techniques often work best. Play can be helpful in a limited way if the therapist uses it to teach way of interaction of the therapist uses play as a break from an emotionally tense if it is used to lower emotional tension. Adults and Kids may also do well in group therapy. Support groups can also be helpful.

Moms & dads play an important role in helping their youngster or teenager. This youngster or teenager will require time and extra nurturance. It is important to distinguish between willful disobedience and misunderstanding of social cues. It is also important to sense when the youngster is entering emotional overload so that one can reduce tension. They may need to prepare the youngster for changes in the daily routine. One must choose babysitters carefully. Moms & dads may have to take an active role in arranging appropriate play dates for the younger youngster. Some moms & dads seek out families with similar Kids. Kids with Aspergers often get along with similar playmates. Moms & dads should help teachers understand the world from the youngster’s unique point of view. Parenting an teenager with Aspergers can be a great challenge. The socially naive teenager may not be ready for the same degree of freedom as his peers. Often moms & dads can find a slightly older teenager who can be a mentor. This person can help the teenager understand how to dress, and how to use the current slang. If the mentor attends the same school, he can often give clues about the cliques in that particular setting.

Adults may benefit from group therapy or individual behavioral therapy. Some speech therapists have experience working with adults on pragmatic language skills. Behavioral coaching, a relatively new type of intervention, can help the adult with Aspergers organize and prioritize his daily activities. Adults may need medication for associated problems such as depression or anxiety. It is important to understand the needs and desires of that particular adult. Some adults do not need treatment. They may find jobs that fit their areas of strength. They may have smaller social circles, and some idiosyncratic behaviors, but they may still be productive and fulfilled.


References—

1. Aarons and Gittons 1992 Autism - A guide for parents and professionals.
2. Aarons and Gittons Dec. 91 Autism as a context. Bulleting No. 476.
3. Bishop and Rosenbloom 87 Childhood Language Disorders : Classification and overview in language development and disorder.
4. Bishop D. 89 Autism, Aspergers Syndrome and Semantic Pragmatic Disorder. Where are the boundaries? British Journal of Disorders of Communication 24
5. Child language teaching and therapy Vol 1 No. 1
6. Ed. Yule and Rutter. Pub. Mac Keith Press
7. Frith 89 Autism : Explaining the Enigma. Blackwell
8. Frith 91 Autism and Asperger Syndrome. Cambridge
9. Granberg 85 Some problems in the Early stages of teaching numbers to language handicapped children.
10. Hughes Martin 86 Children and number difficulties in learning mathematics. Blackwell.
11. Leinonesse and Smith BR 92 Clinical Pragmatics.
12. Neuropsychology of language, reading and spelling New York : Academic Press
13. Rapin L & Allen D. 83 Development Language Disorders Nostologic consideration. JN U. Kirk Ed.
14. Wilson A. 92 Do Semantic Pragmatic Disordered children have a Theory of mind? (MSC research project in press)
15. Wing C. 1992 Autistic Continuum Disorders.


Is Aspergers really a "disorder" -- or just a different cognitive style?

Some researchers have argued that Aspergers can be viewed as a different cognitive style, not a disorder or a disability, and that it should be removed from the standard Diagnostic and Statistical Manual (much as homosexuality was removed).

Why? The debate seems to revolve around the concept of "central coherence."

“Central coherence” (CC) is receiving increased attention across a variety of clinical neuroscience disorders. Essentially, CC describes a style of thinking on a continuum. On one end of the continuum, you have people who tend to think globally or use a gestalt perspective (i.e., the big picture is seen rather than paying attention to details). The other end of continuum includes people who are detail-oriented (i.e., they focus on details). Being on either extreme of the continuum can produce problems. Very high CC can lead to problems with missing important details that need attention or action. Those with very low or weak CC can be detail-bound, losing sight of important global interpretations of the situation or environment.

Aspies appear to have low CC and are overly-focused on details to the expense of a global perspective. This could explain typical Aspergers behaviors (e.g., valuing sameness, attending to parts of objects, persistence in behaviors related to details, etc.). With the concept of central coherence in mind, having a propensity for details suggests a “cognitive style” located on – or near – one end of a continuum, not a “disorder” per say.

Aspies have advocated a shift in perception of Aspergers as a complex syndrome  (i.e., a characteristic combination of opinions, emotions, or behavior) rather than a disease that must be cured. Proponents of this view (a) reject the notion that there is an "ideal" brain configuration and that any deviation from the norm is pathological, and (b) promote tolerance for what they call neuro-diversity. These views are the basis for the autistic rights and autistic pride movements.

The Internet has allowed Aspies to communicate and celebrate diversity with each other in a way that was not previously possible (due to their rarity and geographic dispersal). A subculture of people with Aspergers has indeed formed. For example, Internet sites like www.AspergersTeenChat.com have made it easier for Aspie teens to connect.

There is a contrast between the attitudes of grown-ups with self-identified Aspergers (who typically do not want to be "fixed" and are proud of their identity) and mothers/fathers of Aspergers kids, who typically seek assistance and a "cure" for their youngster.

Baron-Cohen wrote of those with Aspergers, "In the social world there is no great benefit to a precise eye for detail, but in the worlds of math, computing, cataloguing, music, linguistics, engineering, and science, such an eye for detail can lead to success rather than failure." Also, Baron-Cohen cited two reasons why it might still be useful to consider Aspergers a disability: (1) to ensure provision for legally required special support, and (2) to recognize emotional difficulties from reduced empathy.

It has been argued that the genes for Aspergers combination of abilities have operated throughout recent human evolution and have made remarkable contributions to human history. Here are just a few of the “abilities” associated with the Aspergers condition (i.e., a low central coherence cognitive style):
  1. Attention to detail – sometimes with painstaking perfection
  2. Higher IQ – some experts say that those with Aspergers often have a higher than average general IQ
  3. Focus and diligence – the Aspie’s ability to focus on tasks for a long period of time without needing supervision or incentive
  4. Higher fluid intelligence – scientists in Japan discovered that Aspergers kids have a higher “fluid intelligence” (i.e., the ability to (a) find meaning in confusion and solve new problems, and (b) draw inferences and understand the relationships of various concepts, independent of acquired knowledge) than non-autistic kids
  5. Honesty – the value of being able to say “the emperor isn’t wearing any clothes”
  6. Independent, unique thinking – people with Aspergers tend to spend a lot of time alone and will likely have developed their own unique thoughts as opposed to a ‘herd’ mentality
  7. Internal motivation – as opposed to being motivated by praise, money, bills or acceptance – which ensures a job done with conscience, with personal pride
  8. Logic over emotion – although people with Aspergers are very emotional at times, they spend so much time ‘computing’ in our minds that they get quite good at it –and they can be very logical in their approach to problem-solving
  9. Visual, three-dimensional thinking – some with Aspergers are very visual in their thought processes, which lends itself to countless useful and creative applications

More resources for parents of children and teens with High-Functioning Autism and Asperger's:

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

==> Parenting System that Significantly Reduces Defiant Behavior in Teens with Aspergers and High-Functioning Autism

==> Launching Adult Children with Asperger's and High-Functioning Autism: Guide for Parents Who Want to Promote Self-Reliance

==> Teaching Social Skills and Emotion Management to Children and Teens with Asperger's and High-Functioning Autism

==> Parenting Children and Teens with High-Functioning Autism: Comprehensive Handbook

==> Unraveling The Mystery Behind Asperger's and High-Functioning Autism: Audio Book

==> Highly Effective Research-Based Parenting Strategies for Children with Asperger's and High-Functioning Autism


COMMENTS:

•    Anonymous said... I am reading Tony Attwoods book and am waiting for the rest. It is very upsetting thinking about all the time I have lost and realising I must have this problem and no on noticed or did anything. I had the wrong type of counselling from someone who didn't know about AS. Isn't that really damaging ? SHe didn't get me at all. I felt I couldn't say what I wanted to. I felt inhibited and silly. I was worried about the reaction I would get. This is no good if you are having counselling. I read his book and see loads of parallels in my own past. The past which have tried to forget because it is painful and full of conflict. What I need is to compare real life scenarios with other people's experiences. That would really help. It would repair the past and improve my self-esteem. I would see myself in a new light. That's why I am hoping I can put stuff on here and you lot will say yes I did that I know what you mean, ~I am the same.
•    Anonymous said... We always explain it as my husband's brain is wired differently, or he runs a different Operating System - he's running on Linux while us neuro-typicals are running on Windows. It's not just thinking differently; there's more to it than that. But it does have to do with the brain.
•    Anonymous said... I suspect that there is more to all of the Asperger's/Autism/HFA connections than have currently been discovered by science. Generally speaking, I think Asperger's is being more frequently diagnosed because it is no longer culturally acceptable to be emotionally detached. When I read the descriptions of Asperger's symtoms, primarily the stoic expressions, lack of empathy, and perfectionism, I can list off about 50 people of older generations that I've known that would meet those requirements for diagnosis, but would have been considered completely normal until about 30 years ago. In addition, there is still a cultural stigma against any form of mental disability, a stigma that was worse in the past. I think it is entirely possible that we are seeing an increase in diagnosis because more people are seeking diagnosis, not necessarily because there is an increase in the condtion. As far as if HFA and Asperger's is a disbabilty or differenct cognitive style, I tend to think that in some ways it doesn't make a difference. Generally speaking, our society is based around certain rules of conduct and behavior, that have been established by the majority. It isn't good or bad, it just is. That doesn't mean that aspies can't participate, but we do have to understand that we are on the outside adapting to another culture. I tend to think of it as if I moved to a foreign country. I can't expect everyone to change their language and culture to match mine, I have to learn to mesh with theirs. I think it is important to accept both sides, that it is a different way of thinking, but it is also a SOCIAL diability that affects communication, and its the communication side of things that has to be worked on in order to mesh with society.
•    Anonymous said... From my experience (and just my opinion), it is a different cognitive style!

Please post your comment below…

ASD and Social Anxiety

It is estimated that up to 80% of ASD level 1 (high functioning autistic) kids also experience intense anxiety symptoms. Anxiety Disorders (e.g., Obsessive Compulsive Disorder, Social Anxiety, Generalized Anxiety Disorder) commonly co-occur with ASD. When anxiety symptoms are untreated, they can further interfere with a youngster’s quality of life. 
 
Kids with both autism and Anxiety Disorders experience a more limited social world than kids with only one disorder. They may have difficulty (a) adapting at home and in school, (b) making friends and joining in social activities, and (c) breaking their usual rituals to try something new.

Although little is known about what anxiety symptoms look like in autistic kids, the following symptoms, which overlap with Anxiety Disorders, indicate anxiety:

• Withdrawal from social situations
• Somatic complaints
• Irritability
• Avoidance of new situations

Another set of anxiety symptoms may be seen and may be unique to ASD kids:

• Becoming "silly"
• Becoming explosive easily (e.g., anger outbursts)
• Increased insistence on routines and sameness
• Increased preference for rules and rigidity
• Increased repetitive behavior
• Increased special interest

Social anxiety is a condition in which the child has an excessive and unreasonable fear of social situations. Anxiety (intense nervousness) and self-consciousness arise from a fear of being closely watched, judged, and criticized by others. The fear may be made worse by a lack of social skills.

ASD children with social anxiety may be afraid of a specific situation. However, most kids with social anxiety fear more than one social situation. Other situations that commonly provoke anxiety include:

• Answering questions
• Asking questions
• Attending family get-togethers (e.g., Christmas)
• Attending parties
• Being called on in class
• Being teased or criticized
• Being the center of attention
• Being watched while doing something
• Dating
• Eating or drinking in front of others
• Giving reports in groups
• Going to school
• Interacting with people
• Making phone calls
• Making small talk
• Meeting new people
• Performing on stage
• Public speaking
• Taking exams
• Talking on the telephone
• Talking with “important” people or authority figures
• Using public bathrooms
• Writing or working in front of others

Psychological symptoms of social anxiety include:
  • Avoidance of social situations to a degree that limits activities or disrupts life
  • Clinging to the parent
  • Crying
  • Excessive self-consciousness and anxiety in everyday social situations
  • Extreme fear of being watched or judged by others, especially people you don’t know
  • Fear that others will notice that you’re nervous
  • Fear that you’ll act in ways that that will be embarrassing or humiliating
  • Having a meltdowns
  • Intense worry for days, weeks, or even months before an upcoming social situation
  • Refusing to go to school
  • Throwing a tantrum

Physical symptoms of social anxiety include:

• Blushing
• Clammy hands
• Confusion
• Diarrhea
• Dizziness, feeling faint
• Dry mouth
• Muscle tension
• Pounding heart or tight chest
• Rapid breathing
• Shaking
• Trembling voice
• Sweating or hot flashes
• Twitching
• Upset stomach, nausea

Treatment—

Cognitive behavioral therapy, a time-limited approach designed to change thoughts, emotions, and behaviors, has been shown to be successful in treating social anxiety in these children. Cognitive-behavioral therapy for social anxiety typically involves:
  • Challenging negative, unhelpful thoughts that trigger and fuel social anxiety, replacing them with more balanced views.
  • Facing the social situations you fear in a gradual, systematic way, rather than avoiding them.
  • Learning how to control the physical symptoms of anxiety through relaxation techniques and breathing exercises.

Modifications designed to address the cognitive, social, and emotional difficulties include:

1. "Individualizing" anxiety symptoms—Kids should be helped by the therapist to identify what their own anxiety symptoms look like as anxiety symptoms may present differently.

2. Behavioral management—Addition of a reward and consequence system maintains structure and prevents anger outbursts.

3. Combining visual and verbal materials—Use of worksheets, written schedules of therapy activities, and drawings can be added to increase structure in therapy sessions.

4. Games and fun physical activities are important to include in group therapy to promote social interactions.

5. Greater parent involvement—To build on the attachment between parent and child, it is important to have moms and dads learn the techniques and coach kids to use them at home.

6. More education on emotions—Activities such as feeling dictionaries (i.e., a list of different words for anxiety) and emotional charades (i.e., guessing people's emotions depending on faces) are helpful in developing emotional self-awareness.

Three types of medication are also used in the treatment of social anxiety:

• Antidepressants – Antidepressants can be helpful when social anxiety disorder is severe and debilitating. Three specific antidepressants—Paxil, Effexor, and Zoloft—have been approved by the U.S. Food and Drug Administration for the treatment of social phobia.

• Benzodiazepines – Benzodiazepines are fast-acting anti-anxiety medications. However, they are sedating and addictive, so they are typically prescribed only when other medications for social phobia have not worked.

• Beta blockers – Beta blockers are used for relieving performance anxiety. They work by blocking the flow of adrenaline that occurs when you’re anxious. While beta blockers don’t affect the emotional symptoms of anxiety, they can control physical symptoms such as shaking hands or voice, sweating, and rapid heartbeat.

Practicing breathing exercises can help the child decrease the physical symptoms of anxiety and stay calm. Parents and teachers can coach the child on the following techniques:
  • Sit comfortably with the back straight and the shoulders relaxed. Put one hand on the chest and the other on the stomach.
  • Inhale slowly and deeply through the nose for 4 seconds. The hand on the stomach should rise, while the hand on the chest should move very little.
  • Hold the breath for 2 seconds.
  • Exhale slowly through the mouth for 6 seconds, pushing out as much air as possible. The hand on the stomach should move in when exhaling, but the other hand should move very little.
  • Continue to breathe in through the nose and out through the mouth. Focus on keeping a slow and steady breathing pattern of 4-in, 2-hold, and 6-out.

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

==> Videos for Parents of Children and Teens with ASD
 
----------
 

Resources for Neurodiverse Couples:

==> Online Group Therapy for Men with ASD

==> Online Group Therapy for NT Wives

==> Living with ASD: eBook and Audio Instruction for Neurodiverse Couples 

==> One-on-One Counseling for Struggling Individuals & Couples Affected by ASD

==> Online Group Therapy for Couples Affected by Autism Spectrum Disorder

 ==> Cassandra Syndrome Recovery for NT Wives

==> ASD Men's MasterClass: Social-Skills Training and Emotional-Literacy Development

==> Pressed for time? Watch these "less-than-one-minute" videos for on the go.

 

 

15 comments:


Anonymous said...

I have no idea what to do in social situations, so they make me nervous. People would try to force me to interact. I tell them I don't know what to do. They don't believe me and push me on. I make a mistake, they laugh and I'm afraid to try it again. Or, I try, make a mistake and someone yells at me,”You just don't say that!" I ask why not. They think I'm being sarcastic, refuse to answer and alienate me more. Eventually, they just give up on me which leads to further isolation. The only way I can avoid what they do, and the tension it causes, is to avoid them. They ask me why I avoid them. I tell them it’s because they yell at me. They tell me,”Well, if you would just say the right thing." I tell them I don't know what that is. They still don't believe me and think I'm making up lame excuses. Most people I know can't handle my AS traits. It frustrates them too much. That pushes even more of them away.

Anonymous said...

I was shy as a child and also what I call "socially tone deaf," which made me awkward in many of my interactions with other kids, but even at that early age I would say I didn't have social anxiety as much as I had social indifference...I was simply happier spending time alone than with others. That is still true today, even though years of life experience have greatly improved my social skills. I am animated, outgoing and sociable at work and with a few friends whose homes I visit, but I only go to actual social "events" two or three times a year, not because I am anxious but because I just can't be bothered and very much prefer quiet evenings alone at home. When I do go out, I am OK for 2 or 3 hours, but then I begin to feel bored or crowded and am ready to leave. I do think I am happiest and healthiest living alone...it's easier to be around people all day if I have my solitude to look forward to.


Anonymous said...

That is interesting and good to read... I have put off saying I think I'm Aspie like because there are times I can appear 'out-going' - but usually it is when I am talking about an interest of mine in a situation where I am sharing with people who I trust to accept me. I have had people tell me that it's like a switch turns on and I light up and it's amazing to watch. If I think about that at the moment, I get self-conscious and stammer... so I try not to think about it. Like you I can usually do something socially demanding for about 3 hours before I start to shut down and need to go rest. Holiday parties with family and all the kids and chatty conversation can be the most exhausting thing for me... I end up finding some place quiet to hang out before I can rejoin. I don't live alone, but I stay at home while the kids go to school, which gives me my peace. During the summer though, I get grumpier and grumpier until Mommy needs a time out. Thank God for DVD's!

Anonymous said...

That sounds just like me! I love to talk and can actually be the "life of the party," especially when talking about a subject I love and know well. What I find so tiring about socializing is sitting through 2 or 3 hours, in which I may spend only 5 or 10 minutes talking this way and the rest of the time sitting around, waiting a polite length of time to go home, longing to be online...

Anonymous said...

For me during social anxiety it felt like I knew what to say but when that was treated I still didn't know what to say. I do ok with one person but in a group situation I have nothing to say. I don't have anxiety anymore because when I realize I'm not saying anything I just look for something else to occupy my mind with. I do repetitive things like try to straighten objects on a table. It still sounds like anxiety but I don't get those racing thoughts in my head, so in a way it's better. If you want to get treated for social anxiety you can't do it on your own. See a therapist/ psychologist and if you need it take medication. Also, look for books or ways to treat social anxiety online. My way works for me, but may not work for everybody.

Anonymous said...

I have both. I thought social anxiety/phobia was my single issue for most of my life up until recently. It is probably more prominent than my autism. My diagnosticians said that my social anxiety likely primarily arose due the hindrance in my ability to understand people and social norms, but also because of sensory issues. Early on, my psychologists/iatrists tried social situation exposure in an effort to get over it. This was while on SSRIs. That's the classical method, but it never really worked with me. It probably would be more successful on someone who doesn't also have autism.

Anonymous said...

My solution has been finding the right medication: Lexapro. This has helped me a lot, but I still have difficulties.

Anonymous said...

I used to be quite extraverted, but I turned very introverted after years of embarrassing mistakes and failings. And now my social anxiety is pretty bad, and if you took that away I'd probably do well socially.


Anonymous said...

I was placed on antidepressants after a lifetime of dysthymia and bouts of clinical depression. They relieved my social anxiety to some degree, which I was not expecting. I still avoid social situations but I am merely shy now rather than paralyzed. Now I am more likely to blurt something out or ramble on about my particular area of interest. I think my social anxiety masked my possible Aspie traits. (self dx'd).


Anonymous said...

I only have one of the two. Social anxiety disorder. I'm glad I can actually relate to some people since joining this website as an NT xD. I know how to respond in any situation on the spot, I don't even have to think about it. The anxiety symptoms can make it difficult sometimes, but I seem to be getting over some of them now.

Anonymous said...

That is very much my child. At this point, she is taking medication to help her at bedtime.

That article is very helpful.
Thanks.


Anonymous said...

Not sure if my 25 year old has Asperger's. He goes to college for Physical Therapy, but not sure what he wants to be. Doesn't have a job, but had one up till about a year ago. Doesn't want to look for one. Has social anxiety. Doesn't like me, his mom. Doesn't like to be told what to do.


Anonymous said...

Hi Mark,

My 15 year old son has a phobia about going into shops and buying even an ice cream for himself. I think this has developed because we haven’t taken him out enough or ever made him buy anything by himself. I have sat down and talked to him about why it is so important because when he has his own home he will have to do his own shopping.(he seemed to agree with this)
I have explained to him that we will be going shopping together about 2 times a week and 2 times a week he has to go into a shop and pay for his own ice-cream. What happens if he refuses to go into the shop because he is so anxious, do I need to say if he refuses that he will have a consequence and loose his iPod until he carries through with my request. How should I handle this phobia.

We have been following your programme for 1 week now and I have notice a huge improvement in his behaviour and our relationship. Thanks so much.

Mark said...

Re: What happens if he refuses to go into the shop because he is so anxious, do I need to say if he refuses that he will have a consequence and loose his iPod until he carries through with my request. How should I handle this phobia.


This is a wonderful task that you are giving him!!!

I would go in small steps... perhaps something like:

1st time- You go in the shop with him and pay
2nd time- You go in the shop with him - he pays
3rd time- You go in the shop with him - he pays - you stand at the door (as far away as possible) and watch
4th time- Same as 3rd, but you stand right outside the door (out of view, but when he comes out, you are right there)

Also, rehearse all of this at home before attempting (role play ...you are the cashier).

I would caution against punishing him for not following through as this will just raise the anxiety level.


Anonymous said...

One time I was invited to a birthday party. I was so anxious the week before that, kept thinking bout it and how I didn't have a present yet, if I had the time right and other stuff like that.
Then, a day before the party I was doing some stupid stuff with my friend, to keep my mind off of it. Long story short, I got injured, enough that they called in a helicopter. Only two things were going through my mind at that point, one was the pain and the other one was relief at not having to attend that birthday party the next day.

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