I received the call from Dr. B two weeks after seeing her at Children's Memorial. She was kind enough to want to explain her findings to me over the phone and personally tell me why she made the decision she did, which I really appreciated. She followed our call with a letter, which is provided below (in italics)with some additional information to help make things less confusing.
Since the time of the initial evaluation, I had the opportunity to speak to her early childhood teacher, Sarah Mack, review her individualized education plan and school reports and speak with Emily's mother.
Emily has expressive/receptive language deficits, social communication deficits, and mild fine motor deficits. She does not have, however, significant rote, repetitive behaviors or perseverative interests that limit her functioning.
Based on the consideration of the new proposed DSM V criteria for an autism spectrum disorder, Emily does not meet the criteria for an autism spectrum disorder (lack of rote, repetitive perseverative behaviors).
Her diagnoses based on my evaluation are:
Receptive Expressive Language Disorder
Semantic Pragmatic Language Impairment
Lack of Coordination
Let me insert a bit of commentary for you to help you digest what the first page of the letter means. In the second paragraph, Dr. B. is laying out the case that Emily has all of the qualifications to be diagnosed with a Social Communication Disorder. She lays this out very carefully because, at the moment, this is not a diagnosis listed in the DSM 4, a guidebook used by doctors and psychologists all over the world for diagnosing their patients. According to the current DSM, Emily has the symptoms of an autism spectrum disorder known as PDD-NOS (Pervasive Developmental Delay-Not Otherwise Specified).
However, the DSM is updated every 20 years, and the new edition will be published for 2013. At that time, Emily will no longer fit into the PDD-NOS category. This, coupled with the fact that Emily (1) does not have the repetitive behaviors so often associated with autism, and (2) she is a very loving little girl, led Dr. B. to go for the newer (and controversial) label of Communication Disorder. For a complete overview of these proposed changes to the DSM-5 please visit http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=489#
In the comments section of the website, you will quickly find that many parents are unhappy with this new diagnosis, feeling it is a way for some parents to feel better because their children do not have the autism label.
Emily received three diagnoses, but I will only explain the first two seeing that we all know my kids are not coordinated!
Receptive Expressive Language Disorder:
taken from http://www.nlm.nih.gov/medlineplus/ency/article/001545.htm
Language disorder in children refers to problems with either:
Getting their meaning or message across to others (expressive language disorder), or
Understanding the message coming from others (receptive language disorder)
Some children only have an expressive language disorder. Others have a mixed receptive-expressive language disorder, meaning that they have symptoms of both conditions.
Children with language disorders are able to produce sounds, and their speech can be understood.
For most infants and children, language develops naturally beginning at birth. To develop language, a child must be able to hear, see, understand, and remember. Children must also have the physical ability to form speech.
Up to 1 out of every 20 children has symptoms of a language disorder. When the cause is unknown, it is called a developmental language disorder.
Problems with receptive language skills usually begin before age 4. Some mixed language disorders are caused by a brain injury, and these are sometimes misdiagnosed as developmental disorders.
Language disorders may occur in children with other developmental problems, autistic spectrum disorders, hearing loss, and learning disabilities. A language disorder may also be caused by damage to the central nervous system, which is called aphasia.
Language disorders are rarely caused by a lack of intelligence.
Language disorders are different than delayed language. With delayed language, the child develops speech and language in the same way as other children, but later. In language disorders, speech and language do not develop normally. The child may have some language skills, but not others. Or, the way in which these skills develop will be different than usual.
A child with language disorder may have one or two of the symptoms listed below, or many of the symptoms. Symptoms can range from mild to severe.
Children with a receptive language disorder have difficulty understanding langugae. They may have:
A hard time understanding what other people have said
Problems following directions that are spoken to them
Problems organizing their thoughts
Children with an expressive language disorder have problems using language to express what they are thinking or need. These children may:
Have a hard time putting words together into sentences, or their sentences may be simple and short and the word order may be off
Have difficulty finding the right words when talking, and often use placeholder words such as "um"
Have a vocabulary that is below the level of other children the same age
Leave words out of sentences when talking
Use certain phrases over and over again, and repeat (echo) parts or all of questions
Use tenses (past, present, future) improperly
Because of their language problems, these children may have difficulty in social settings. At times, language disorders may be part of the cause of severe behavioral problems.
The outcome varies based on the cause. Brain injury or other structural problems generally have a poor outcome, in which the child will have long-term problems with language. Other, more reversible causes can be treated effectively.
Many children who have language problems during the preschool years will also have some language problems or learning difficulty later in childhood. They may also have reading disorders.
Difficulty understanding and using language can cause problems with social interaction and the ability to function independently as an adult.
Reading may be a problem.
Depression, anxiety, and other emotional or behavioral problems may complicate language disorders.
This disorder is also known as Developmental aphasia; Developmental dysphasia; Delayed language; Specific developmental language disorder; SLI; Communication disorder - language disorder
Semantic Pragmatic Language Impairment:
taken from http://members.tripod.com/Caroline_Bowen/spld.htm
Semantics is the aspect of language function that relates to understanding the meanings of words, phrases and sentences, and using words appropriately when we speak. Children with semantic difficulties have a very hard time understanding the meaning of words and sentences.
This is sometimes apparent from their unusual responses when they are told to do something, and sometimes it is revealed by the questions they ask, and the things they say about words. There is an example here of 12 year old Nerida's interpretation of the word "acquire". In the example, she was unable to detect from the context that she was being asked what "acquire", rather than "a choir" meant.
People with semantic processing difficulties have particular trouble with abstract words like 'curious' or 'vague', words that relate to feelings and emotions such as 'embarrassed' and 'anxious', and words that refer to status (for instance 'expert' or 'authority') or degree (for example, 'essential' or 'approximate').
They have difficulty with idioms, sayings and slang expressions, often taking them literally or interpreting them oddly. For example, when asked if he enjoyed spending time with his friends, a 14 year old with semantic processing problems replied, "I don't see how you can spend time, and I certainly don't see how you could enjoy it because spending time is not something you can do. You can only actually spend money".
Another difficulty children with semantic problems experience is that they may not be able to identify the key point or topic in a sentence, and because of this may suddenly change the subject, very obscurely, apparently thinking they are on the same subject. Here is another real example from a girl aged eleven. Question: "Could you get the book off the shelf and give it to me?" Reply: "The Gulf Stream warms the coast-line"
NOTE: CLOSE QUESTIONING REVEALED THAT THE OBSCURE CONNECTION HERE WAS THE CONTINENTAL SHELF, AND THE GULF STREAM. HER RESPONSE WAS RELATED TO HER DEEP INTEREST IN MARINE BIOLOGY AND OCEAN CURRENTS.
Pragmatics is the area of language function that embraces the use of language in social contexts (knowing what to say, how to say it, and when to say it - and how to "be" with other people).
Children with pragmatic difficulties have great trouble using language socially in ways that are appropriate or typical of children of their age. They often do not understand that we take turns to talk, and they will "talk over the top of you" at times, or, at other times respond to what you say with inappropriate silences, or in a voice that is too quiet. They may interrupt excessively and talk irrelevantly or about things the listener shows no interest in. Their communicative behaviour often appears rude and inconsiderate.
They often do not assume prior knowledge. So for example, one boy explained to me in minute detail how to wash a car, wrongly assuming that I needed (and wanted) the information and that I had never washed a car.
On the other hand, they may assume prior knowledge that the listener could not possibly have, and launch into a long disquisition without describing in sufficient detail the participants, location and general background of their story.
They can go on far too long telling stories, and include so much detail that the listener becomes disinterested.
Pragmatics skills include:
knowing that you have to answer when a question has been asked;
being able to participate in a conversation by taking it in turns with the other speaker;
the ability to notice and respond to the non-verbal aspects of language (reacting appropriately to the other person's body language and 'mood', as well as their words);
awareness that you have to introduce a topic of conversation in order for the listener to fully understand;
knowing which words or what sort of sentence-type to use when initiating a conversation or responding to something someone has said;
the ability to maintain a topic (or change topic appropriately, or 'interrupt' politely);
the ability to maintain appropriate eye-contact (not too much staring, and not too much looking away) during a conversation; and
the ability to distinguish how to talk and behave towards different communicative partners (formal with some, informal with others).
Semantic-Pragmatic Language Disorder
Children with SPLD (called semantic-pragmatic disorder (SPD) in some literature) have a language disorder that affects both semantic processing and the pragmatics of language use. Some authorities see SPLD as part of the autism spectrum of disorders while others see it purely as a language disorder.
I once said to a twelve year old with semantic and pragmatic difficulties "Tell me all about yourself." He responded, perfectly seriously, with "It will take a very long time", and made an immediate start!
Although isolated examples like the ones here can appear quite amusing and even endearing, these difficulties with word comprehension and social aptitude can be extremely embarrassing, upsetting, confusing and frustrating for the child with SPLD, and can give rise to teasing and criticism of the child.
Family, peers, teachers and other adults need to apply great sensitivity to guiding the young person with SPLD. Understanding the nature of the disorder is helpful in this regard.
Speech-Language Pathology treatment is planned on the basis of a formal language assessment, interviews with the client and their caregivers and clinical observations.
It is always necessary to determine whether the client has:
isolated semantic processing difficulties OR
isolated difficulties with the pragmatics of language use OR
a combination of the two OR
semantic pragmatic language disorder (SPLD) OR
SPLD in combination with another communication disorder that is NOT in the autism spectrum, for example, developmental apraxia of speech OR
SPLD in combination with another disorder in the autism spectrum, for example, Asperger's Syndrome OR
SPLD in combination with another disorder that is NOT in the autism spectrum, e.g., Attention Deficit Hyperactivity Disorder (ADHD).
The diagnosis of isolated semantic difficulties, isolated pragmatic difficulties and combinations of the two is "routine" for many paediatric SLPs. The diagnosis of SPLD can be difficult, lengthy and indeterminate, often involving several professionals in addition to the speech-language pathologist (family physician, paediatrician, audiologist, clinical psychologist, occupational therapist, etc). There are many children with semantic and pragmatic difficulties who don't quite "fit" into a definite diagnostic category.
Clinical management of any communication disorder is geared to the unique needs and capacities of the particular client in their particular setting. Children with semantic difficulties, or pragmatic difficulties, or a combination of the two, or SPLD are no exception.
The letter from Emily's doctor ended with her recommendations for intervention.
Therapeutic recommendations include:
Continue with an individualized education plan that include a preschool (blended classroom preferable), speech, occupational therapy, emphasis on social use of language.
Would recommend private speech and occupational therapy.
Enrollment in a private social language group.
Please call with any questions.
Dana M. Brazdziunas, MD
Director, Developmental-Behavioral Pediatrics
Associate Professor of Pediatrics (at Northwestern)
Feel free to comment here or on FB. Thanks everyone for all the support you've shown over the past two years as we've struggled to understand how we can be of help to my sweet little Emily.