Semantic Pragmatic Disorder

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Hello,

I found this place because of Dr. Phil, of course. My 4 year old son doesn't have Asperger's. At least, I don't think he does. But he has been diagnosed with Semantic Pragmatic Disorder, which depending on who you ask either is or isn't an ASD. It has very similar manifestations, but if it is Autism it seems to be very high functioning.

Do any of you have experience with this disorder? My questions are about future prognosis for a happy, normal life. I'm especially interested in hearing from people who are young adults - what is it like for you coping with this, and do you consider yourself to be living a happy, productive life. What are your struggles?

I would be eternally grateful to anyone who can share this with me. My greatest fear is that my little guy will struggle all of his life and not make significant social connections. Right now, he's adorable and sweet and affectionate and everyone loves him, but I know that the world is more forgiving of babies with disabilities than it is forgiving of teens and adults. When you're not little and cute anymore, it's a little harder.

I don't need any technical advise about therapy and tests and whatnot - we've already been through that and he is getting excellent speech and occupational therapy. What I'm desperate to hear is personal stories from people living with the issue.

I have often seen Asperger's and SPD come up in the same articles, and I know that they are different disorders that share many of the same issues. I hope that some of you won't mind posting your situations!

Thanks, and it's nice to meet all of you.

Pixel

Welcome, Pixel!

We are really in the middle of a revolution. Most of the studies out there that messure life skills and happiness WILL NOT relate to what our children experience because the young people coming of age now are the first generation to get the therapies and the understanding of a larger comminity. You are right to ask young adults--their experiences will be most telling.

I expect you to get many answers. If that doesn't happen, consider posting the question in one of the more general forums here.

Again, welcome!

I think I will take your advice and go ahead and put a copy of this in a more general forum. Thanks for your response!

This area is so hard to pinpoint. I learned to talk fairly early, so I am not diagnosed with SPD. However, I do have AS and every single symptom of Auditory Processing Disorder (APD), which comes to much the same thing.

Honestly, my struggle has been in defining what is a "happy, normal life." As long as I tried to do the "normal" thing (before I was diagnosed), I ended up feeling like a failure, hating myself, and wishing I would disappear, even though I was nominally successful. Over time, I realized I was atypical, and I had to figure out other ways to exist, rather than following the path that everyone said led to "happiness." I realized happiness was inside, not outside. Happiness was self-generated, self-defined, and that any "happiness" that was dependent on the opinion of the world wasn't happiness at all. Since then, I have lead a very happy, productive life.



He may very well struggle, but I don't think you should fear it. Einstein, Caesar, Ford, Edison, Churchill, Lincoln, Tesla, and countless other significant men and women had difficulties that would today be classified as "disabilities." Their hardships made them strong people, people of unique experience and vision.

In sum, I would say, don't fear that he will struggle. Instead, fear that he will become fearful. Fear will lead him to do what others tell him, rather than what's in his own heart. Fear will keep him from being himself, which will drive away significant social connections in droves. Fear will close his heart and keep him from becoming the shining species of man formed from striving and courage in the face of more-than-usual adversity. Fear will keep him from truly living, and that is the greatest loss.

Thanks for this. This actually made me realize that this is what I worry about more than the struggle. I mean, we all struggle, don't we? So I was incorrect when I stated that it's the struggle I'm worried about. Even those of us who are technically "normal" struggle with issues all the time. And to ask a lot of my friends, they'll tell you I don't know when to not be blunt with people, so what's really normal socially anyway? I've often wondered if I have a form of autism because of my lack of internal monitoring (I tend to blurt out whatever I think and not sugar coat things) and because I taught myself to read (even medical texts) when I was 3. But I'm an extremely talkative and social person, and make friends quite easily, so I thought that sort of ruled out any sort of autism on my part.

I don't know much about Auditory Processing Disorder, but what I do know seems like it's a much tougher hurdle to overcome than SPD. Is that correct? Based on your writing, I would never know you had an issue at all - your command of language in writing is really above and beyond what I see in my college classes (I'm a student nurse!). Is it different for you when speaking to people?

Again, thanks so much for sharing. The hardest thing for me has not been dealing with my son, who really is a wonderful, funny kid, but not finding any information about people in their teens or adulthood who live with these issues every day.

Autism/AS doesn't spring up spontaneously. Several recent studies have shown that the parents of kids with autistic symptoms almost always have pieces of it themselves. They're just less pronounced and incomplete. The kid gets both sets of genes and ... there you go. My own parents are like this. Both have traits of AS, but neither would be diagnosed. It sounds like you have certain pieces of it yourself, and your son has SPD.



I haven't had real experience with SPD, so I can't be certain. APD stems from a mix-up between the ear and the brain. My hearing is so acute I can hear in the ultrasonic range. But I have serious trouble when more than one person speaks at a time. I can't take notes in a lecture. I have trouble following verbal directions and conversations. Loud noise confuses me.



No, I'm known among my family and friends as very articulate. I sometimes have to search for words, but I have a larger working vocabulary than anyone else I know and have beaten PhDs in Scrabble, and routinely corrected my English professors corrections.



You're very welcome. I'm sure your son will be fine. A deficit like SPD builds an iron character if one believes that the soul is healthy and intact withall. Many great minds have blossomed because someone either forgot to tell them they were handicapped, or they refused to believe it.

Feel free to write with any questions.
G.D.

Just wanted to say that my son was a complete nightmare and worry to us as a baby and child. No one in those days understood the problem and he was about ten when it was recognised. He is now 25 and really great. We thought he would need looking after all his life: he was very unhappy and disturbed and eventually went to a special school. To our amazement, he eventually went to university and now has a job. No one at the company knows about his SPD. He has been there two years. He's a great, warm hearted young man, has a group of friends and loves music. Hopefully, he will find a partner one day. We would never have believed he would turn out as he has. There is hope!

I'm constantly surprised at all the titles they seem to be able to come up with for all the components AS kids will have. I guess you get the component title if they aren't sure there is a whole picture for an AS title, but I have to say I don't think the title really matters. If it gets you the services your child needs, and the accommodations at school, you're all set. Not that any of that is as easy as it sounds, but the point is that the label means far less than what the label might get you.

I hadn't heard of PSD but certainly my AS son has it. He is in speech for pragmatics. He is an excellent speaker with a wonderful command of language. What he can't do is hold continually appropriate interactive conversations. He flows to the next thought he is interested in, instead of responding to the person he is talking with. He doesn't read the social cues that would tell him the person he is talking to is getting frustrated, and so on.

None of which is hopeless. He gets speech therapy to practice these skills and he has friends. He does well in school, although he has severe disgraphia/hypotonio issues, which have been where the real burdens come from.

But he is an amazing child, HAPPY, and comfortable in his own skin. Before he was diagnosed there were problems and I could see him shutting down. But just having an explanation made a world of difference to him, and he likes knowing that he is normal for "kids like him." All that is very different than it was even a generation ago. There are many people out there who really do understand, and schools that will allow kids like mine to thrive. There may be more that do not get it right, but knowing that you should be able to find better alternatives is important. There is absolutely no reason that you cannot have a happy child who is thriving in life and school. You may have to adjust your perception of what that means a bit, because AS kids have different ideas, often, than their NT parents, but if you tune into your child and help him on the path that HE chooses, he'll be fine.

You'll find pro's and con's to having this specific unique child, but that is true with or without a special needs diagnosis. So much goes into our experience with our kids. Ultimately, raising a high functioning AS child involves what every parent should do with every child: tune into your child, understand things from his or her perspective, and help him channel his talents and adapt for or manage his weaknesses, so that he can lead a successful life in the way he wants to.

Good luck!

DW

PS - I had no idea this site had been mentioned on Dr. Phil. I've never watched him. What did he say?

Greetings, and welcome to Wrong Planet.

Ive never heard of SPD before, so I looked up information about SPD here:

http://en.wikipedia.org/wiki/Semantic_P ... c_Disorder

If this information is inaccurate then please tell me, because it is all I have to go by. I should start off by saying that based on the information written on Wikipedia, I can't see any major difference between SPD, and high functioning autism (sometimes referred to as Asperger's syndrome). The only difference that I saw was that the article didnt mention anything about stimming, where as stimming is commonly associated with Asperger's Syndrome/autism.

In case you dont know what stimming is: it is a repetitive, non-useful, movement done to help calm the person or help them think clearly. Common examples of this would be pacing back and forth, rubbing something repeatedly, bouncing your foot up and down, rolling your fingers, swaying side to side, etc. I still do this at work, my co-workers just think I am fidgety.

In any case, I dont think you need to worry too much. If you could hear me speak, then it would be fairly obvious that I am not as eloquent as my posts seem.
I didnt start talking till I was 2 and a half (which I am told is late).

I often times have to pause during my speech to find the right words (aphasic speech).

Correct verb tenses are my arch nemesis.

Properly reading other people isnt exactly my forte

I definitely have a few areas where I have immense expertise.

I have difficulty processing more then 1 stream of information at a time. For example, I couldnt have a conversation any place other then a quiet room because the background noise of someplace like a restaurant would drown out the people I am trying to hear.

I also cant take notes because that would require me to look at the paper, and concentrate on writing, while listening to the teacher at the same time. That is a practical impossibility for me.

My range of hearing is much more sensitive then other people. High pitch sounds that wouldnt bother most people are very painful to me.

My coordination abilities allow me to run, throw a ball, and catch a ball, but only 1 at a time. Attempting to run while throwing would generally result with me face down in the dirt. In general, I can walk where I need to go, and do what I need to do, but playing sports such as basketball, soccer, etc. are not my strong points.

I also have a very good ability with mathematics and physics. Which is partially why I received a 3.7 in my mechanical engineering degree despite never taking notes. Although, I must point out, that my engineering classes average a 3.92 GPA, whereas my average GPA in English and literature classes was a 2.5. The only reason my GPA was a 3.7 was because I had a lot more engineering classes then English classes.

I have never been very good at (or interested in) small talk. I have developed a few prepared topics that I can talk about which make me seem social, but in general those only last for about an hour. Its enough time for an interview, or meeting somebody new, but after I run out of pre-scripted topics to discuss, I generally veer off the socially appropriate small talk topics, and into discussing my views on the Jupiter Direct vs. Ares debate (if you dont know what that is, your not alone).

Overall, if this sounds like your child, then you arent alone. And rest assured, there is nothing horribly wrong with your child. He is probably different, but that doesnt mean that he will live a unsuccessful, depressing life. He will of course face difficulties, but who doesnt? What determines a man's worth in life isnt what he was given at birth, or what lucky breaks he has had. Instead the true measure of a man is taken by how he handles adversity. He may not face the same problems as everybody else, but there is no reason that he cannot overcome these problems.

As groovydruid said. Happiness and purpose isnt found in the expectations of society. Your son has to determine what will make him happy, and do that. If he can find what he enjoys, even if it is different then what most people think he should enjoy, then he will be happy. I am also happy with my life as I have it setup. I dont go out to parties, or have dozens of friends that I see on the weekends and watch sports with, but I am happy with what I have. As far as productive? I guess that depends what you mean by productive. I have a job as an engineer, I get payed well, and I live independently. I dont know about your son's strengths and abilities, but I think age 4 is a little early to be worrying about how well you son will contribute to society.

Albert Einstein, who arguably provided a great deal to society, didnt start talking until he was 4 years old, and got below average grades in elementary. I dont think you can look at a person who is that young and start worrying about their future. Especially if they are receiving help and understanding designed to improve tier chances. I never got any special education, but I turned out fine. I dont see any reason why you son cant also thrive.

I had problems learning to speak and to understand, and, yes, at times I have struggled. However, my parents always encouraged me to focus and build upon the things that I do well. I have found my own normal and am content in that. The challenge is refrain from looking to other people for how I "should" be.

Z

SPD....................................CALLING ALL SPEECH AND LANGUAGE THERAPISTS!!

Seems to me from asking around and researching that most SALT's do not do much training in Pragmatics!! And it would seem that it is the pragmatic difficulties that give children on the spectrum most problems. The blurting out, inappropriateness and lack of impulse control in these children is often wrongly dealt with because of lack of understanding from even the professionals.

What we need more of is pragmatic training for SALTS, in the UK it is only touched upon in the training of a SALT. Why?

So until we get the specialist help, children and adults will still be frowned upon for 'saying the wrong thing at the wrong time', which is often regarded as disruptive. Then what happens is that punishment follows For what? Something that they can't help. Would we punish a blind child for bumping into someone? Would we punish a deaf child for not hearing the fire bell? No of course not, and our children are just the same. When will someone realise and DO SOMETHING POSTIVE instead of making lives even more difficult than they already are?

Hiya i have semantic pragmatic disorder and was diagnosed at the age of six im now nealry 23, my gran and mum had to go to court to get me into a normal primary school and won, the person who diagnosed me said to my gran and mum that i had to go to a normal school if i didn't and went insted to a specail school he said i would start copieing the other kids in that school so i would have been worse if my mum and gran didn't win at the court. In pirmary school i was bullyed quite a few times due to my SPD. and was esayer 2 years after i was in primary school when my little sister came to the same primary school so i kept following her and nicking her friends as they were younger than me i made friends esayer but only had one friend the same age as me but i would still prefure to stick with younger kids than me. I did the same thing in secondry school luckly i made friends with the teachairs at the school i was always called teacahirs pet specialy with my tutor. but my best years in school was my last 2 years was my gcse's my best was a D in art the rest of them were poor but i did my best i love my secondry school if any pairent wan't there kids at a great school i would choses kingdown school in warminster in wiltshire uk.
I left my secondry school in 2004 and tryed working part time in my secondry school printing office but then i found my dad moved to liverpool for one year and moved back due to a roaw with my dad and lived back with my gran in april 2008 then i met my partner online internet dating website in july 2008 and started dating got engaged in nov 2008 and moved to london in dec 2008 and started trying for a family and found out in september 2010 im pregnant and im due 29th april 2011 and im a tipical house wife but not marryied but thats how i like it im engaged and loving my new pregnancy shape

hope all this info is helpful to you and anyone can contack me if you need any more info about SPD love from mrslblades xxxx

Hi - my 6 year old son has recently been diagnosed as having Sematic Pragmatic Disorder. He also has dyslexia-type difficulties. By this, I mean that he has problems with short-term memory (though his long-term memory is excellent) and auditory processing speeds (he has performed at anything between 0.04th centile and 3rd centile in tests), letter reversals etc, though his reading is actually really good, though of course he has problems with understanding what he reads. He seems to learn something, only to forget it again when he learns something new. All of the relevant professionals (Ed Psych, Speech & Language therapist, teachers, learning support staff) all say "don't worry, he'll get there", but I worry so much about what his future will hold. He is happy, loving and popular despite his social difficulties, but I wonder whether he will ever be able to gain any qualifications, hold down a job, make and keep friends etc. I just wondered whether anyone else has experience of a child with these difficulties and if so how did they progress as they got older? Did you find anything particularly helpful? Thanks.

My son was diagnosed the same as well, his functional communication ability is the 5th percentile. We have been re-referred back to the Neuro-Psych for another ASD assessment. He was assessed a year ago, but without the speech/language assessment being done. Last year they said he was emotionally withdrawn and socially immature. He is a serious kiddo, always has been although he's got a wicked sense of the ridiculous.

He is a fantastic kid. He has four older siblings who are his friends for now, and he learns from them by watching (which is what he does before trying anything). He is not reading yet, and we are starting assessments for him to check for learning disabilities, but he's got an IQ of 132... so hopefully he'll do all right.

I'm not going to tell you not to worry. I am a worry wart myself. What I will say, is even as they grow up bigger use that humor or appreciation for the uniqueness to pull you through.

Hi - how old is your son please? We have been told that our son is showing as average intelligence without making any allowances for the SPD, so according to the Ed Psych this means that he is definitely of above-average intelligence, but as to exactly what his IQ is, we have no idea. We aren't bothered about him being a rocket scientist or the like, but it would be nice to think that he might be capable of leading an independent life, having a circle of friends and holding down a regular job when he gets older. We tried to find a support group so that he could mix with others with the same difficulties, as we thought it would be invaluable support for him as he gets older to know that he is not the only one affected by this condition and it would provide another circle of friends for him, but so far we have hit a brick wall. The paediatrician has asked around, but also to no avail. I don't know if you have come across anything? We live in the UK. Like your son, he also has a cracking sense of humour though is a serious child.

We also have a daughter (2 1/2 years younger than our son) who is not affected. Our 'Little Man' is currently having Speech & Language Therapy, Occupational & vision therapy, Johannsen sound therapy and at school they give him extra learning support lessons and carry out a play programme with him to bring on speech & language & play skills. He enjoys school, but needs full-time 1:1 support in class to break down the language and so access the school curriculum. He is just starting to notice that his work is differentiated from his peers, which causes him some frustration. Does your son need support in school/differentiated work and do you find that anything in particular works for your son on a learning front or generally?

Thanks

Hello! This is my first time visiting Wrong Planet and I was delighted to see such recent posts on a subject that interests me. I live in the US and my 6-year old son is currently diagnosed with a cognitive disorder not otherwise specified. He has had noticeable issues since 15 months (hypotonia, trouble with motor planning) but since age 3 it's primarily language and communication that cause him trouble (his handwriting is still bad but it doesn't frustrate him very much anymore.) We never felt that he was autistic because he is very engaged and social in his actions - he is however notably hindered socially by his difficulties processing language and can't follow conversations easily nor can he readily find the words he wants to say. They don't use the diagnosis of Semantic Pragmatic Disorder in the US but in all my research over the years, it's the disorder I feel most closely describes his main struggles.

We had an evaluation done a year ago by a Developmental Psychologist and although no IQ score was given, he tested in the low average to average range in most areas. We were told not to take this as a reflection of his potential or intelligence though because as hard as it has been for him to learn every single thing, he has learned and has kept on par with other 1st grade peers. They did detect problems with working memory. This is the type of memory that allows you to store language and other fresh concepts in your head, make sense of them, and store or respond to them. The rate at which he can digest new information is very low. However, once he knows something, he is not inclined to forget it. They tell me he will never be a kid who can cram for tests - he will require repitition and memory tricks like mnemonics. He really has a hard time with multi-step directions. With so little throughput, you can imagine it takes all his effort to understand and execute the first step and then by the time he's ready to move on to step 2, he's forgotten what it was. We have purchased some software programs that are aimed at following directions as well as some that build oral comprehension. One consists of short stories that are relayed orally along with visual images. Questions then follow and he can practice paying close attention and then trying to remember what was said.

He participates in a main stream 1st grade class and has 1-on-1 support for most of the academics (they leave him to fend for himself during music, library, physical education, etc.) They pull him out for a half-hour a couple of times a week for special instruction (speech and language therapy as well as occupation therapy.) We supplement this time with weekly private SLP and OT visits. What are the goals of vision and sound therapies that your child receives? I am concerned that in a couple of years when the curriculum becomes more complicated and requires more abstract thinking, he'll have a much harder time.

I would love to be in touch with other parents with similar kids. It seems there are so many support groups for kids who fit your more classicly defined cases of Asperger's or Autism. Although belonging to those groups has proved helpful in some ways, they don't address many of the topics I'd like to focus on. Thanks!