Written 2003, by Babs, mother to an 8 year old with SPD.
"Most people in the field of autistic disorders do not consider there is any value in separating semantic-pragmatic disorder from the autistic spectrum. The disadvantage of doing so is the failure to recognize the child's whole pattern of disabilities and therefore a failure to address all their needs. It is also most misleading for the parents." Lorna wing MD, FRCPsych
I am the mother of a child with Semantic Pragmatic Disorder. I was asked to write this article for the Hi2u website so that people unfamiliar with this disorder can begin to understand what it means to have SPD. My hope is that it also gives teachers and other professionals involved with a child with SPD an insight to what life can be like for the parents and carers too.
Semantic Pragmatic Disorder is language/communication disorder, commonly found in children on the Autistic Spectrum. The disorder's validity as a sub type of developmental language disorder, which is where it was originally defined by Rapin and Allen back in 1983, has been questioned on and off since it's introduction because of the autistic features the children often show. The professional community is slowly extending the boundaries of the spectrum to acknowledge disorders such as SPD and high functioning autism that can blend into the realms of "normality".
Children affected by this disorder have difficulties in the area of the "triad of impairments", typically associated with Autistic Disorders, ie. social interaction, communication and imagination. Their autistic features, however, are mild, but it is important to recognise these when supporting the child.
Children are usually first identified as having this disorder by the noticeable delayed language development. Parents begin to feel that there is something not quite right, but just cannot put their finger on the problem. Language starts to appear eventually, but there is often a severe impairment in understanding and using language and applying linguistic rules in conversation. Typically the child will sound odd and stilted in conversation, using memorized phrases inappropriately, out of context, echoing language like a parrot, not sticking to the topic of conversation, not knowing what is being talked about, and not knowing what to say in return to a question asked. He/she will take language quite literally, and will struggle to understand the many idioms in use in the English language today, i.e." raining cats and dogs" will mean just that to a child with SPD!
SPD children often fail to grasp the important points in a conversation, they will have difficulty processing information especially in new situations. Generalising what they have learnt in one situation and transferring that knowledge to another can be problematic for this child. They will often have poor body language too. They may stand too close to their conversational partners, avoid eye contact or may walk away in the middle of a conversation. He/she, once the language starts to progress, will start to talk fluently and articulately, eventually achieving good grammar and a good vocabulary, but they will continue to be far more capable of talking than understanding the meaning of what is being said. Obviously, difficulties with both the Semantic (meaning of words) and Pragmatic (social use) aspects of language can have an effect on the child's social life. Other children may reject the child and this can have an effect on the child's self-esteem. The need to be social is quite strong in the SPD child and he/she will try hard socially. He/she will be willing to converse, but his/her difficulties will become more obvious as the language gap widens between him/her and his/her peers. Some children may have to be placed in language units, but this is not always the case, with good support in mainstream they can do very well for themselves.
As, a toddler, I knew that something wasn't right. I thought my son was deaf. He would spend a lot of time watching his television on his own in his bedroom, jumping up and down repetitively on his bed! My attempts to have him stop this behaviour were fruitless. He would play with toys, but not REALLY play with them. He would, for example, line up a full set of Mr Men books from one end of the living room through into the hall! Then after that, it would be Playstation games! He loved to play with his cars, and would occasionally line them up too! But his interest, when it came to entertainment, was the Playstation console. To this day it is an obsession that he cannot live without.
When my son talked initially, he spoke with jargon, words that just sounded babble and made up. He would echo language, repeating the last 3-4 words of your sentence back to you. He was very chatty, but you could not understand what he said or indeed wanted. As you can imagine trying to express your needs and not having someone understand what you want to say would be immensely frustrating. His frustrations were released through a general non-stop tearfulness. Every few minutes we would have a few wails. This is what I found to be draining as a mother. Mothers' have a natural instinctive urge to respond to a child's cries. Having a crying child 24 hours a day puts tremendous strain on a mother. I remember ringing CRYSIS one afternoon in despair and being told, "He would grow out of it!" Well, I suppose he has in some respects, it's just that the wailing is a lot louder now, but less frequent! :-)
The toddler years passed and the school years approached. My son was nowhere near ready to start nursery. I had to delay his entry into nursery by a year. At almost four he was still in nappies! His language was poor. I mentioned it to my Health Visitor at the time, who said that it did not seem to be a problem!
Thankfully, when my son started nursery, he was lucky enough to have a fully qualified primary school teacher. I can remember the day vividly, when she called me over for a quick chat to tell me that she thought my son was Autistic. My world collapsed that day. I can still feel the pain in my heart right now whilst writing this four years later! Ok, it could have been broken to me a little better than that, but I hold no grudges at all. I owe everything to this lady, she was the one who was vigilant enough in the group of professionals that had seen my child regularly, i.e. the GP and the Health Visitors, etc. to raise her concerns.
The result of her vigilance was a referral to Speech Therapy and an Educational Psychologist. The teachers, in the normal classroom setting, carried out the Speech Therapy, i.e. there was no withdrawal. However, we started to see some behavioural problems once my son was in full time schooling with very little support.
Obviously, the tantrumming, anxiety and behaviours we were seeing were due to the processing difficulties my son was having and the increasingly changing situations and surroundings and his loss of routines. Not being able to understand your world leads to an inability to predict outcomes and events, this in turn leads to insecurity. Insecurity causes anxiety and then the child tries to reduce stress by carrying out repetitive behaviours, such as, rocking and then also uses coping strategies such as crying, tantrumming, hitting etc.
I wanted help from school for the emotional side of his disorder, but I was not getting through to the teachers who told me, "He's OK in school!" That may well have been the case, but I doubted it. The previous school's teachers' interpretation of how he coped was remarkably different and more along my lines! With no help forthcoming for the frustrations of conforming to his school day being vented on release from school and at home, I sought out a Child Psychiatrist who diagnoses Autism. I still had no formal diagnosis, but went to him with my concerns that this indeed could be an Autistic Spectrum Disorder.
The result was a diagnosis of SPD and a years worth of therapy [more to keep me sane I think! :-)].
Today, despite all of the problems we have been through, especially trying to secure help for my child, [which incidentally is ongoing-I won't bore you :-)], my son is coping really well in mainstream and is achieving some good grades. The future is not as bleak as was painted back in his nursery days.
If you read this as a parent of a young child just diagnosed with this disorder, I would say that you must have hope and never give up. The very nature of this disorder is that it is a developmental disorder that WILL improve with age and support. The babbling incoherent three-four year old child will become intelligible and able to make a good conversation. Some people suggest that, as an adult, an SPD child will just be a little eccentric if anything well, how many people do you know that you could say that about? There you go! Do not worry. :-)
I have a web site all about SEMANTIC PRAGMATIC DISORDER that may interest you if you would like to find out more. You can listen to some examples of my son's speech and see some of his work too. Please come and visit, I would love you to sign my guestbook whilst you are there too. My site is linked to a friends Autistic Spectrum Disorder site. She has a message board for parents who have children with ASD and SPD. If you are a parent of a child with SPD, why not pop in and say hello, everyone is very welcome.
Written 2003, by Babs, mother to an 8 year old with SPD.
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