Expert: Valerie Herskowitz - 1/21/2012

Question
Hi Valerie, I have written before regarding my son who is now three and has an appointment at the communication disorder clinic in february. I have been told by an autism specialist at the centre he attends seven hours per week that after making their assessments they feel that he fits the criteria for autism and also from the autism advisory service where he recieves one to one support for an hour and a half each week. They have also assessed him and have come to the same conclusion. I have been told to expect a diagnosis.However I am still having huge difficulty excepting this as whilst it he clear that he is not developing normally, I often feel he has too many skills to be autistic, so was wondering if you could give me your oppinion please. I would hate for him to be labled if he did not have the disorder or maybe its just me not excepting this.
Firstly he had no words at all until 2 years, 15 words at 2 years and 4 months and a couple of learnt phrases and no receptive language at all. No response to name until after the age of 2, did not respond to pointing until 2 and a half,very hard to gain his attention at all,ran aimlessly everywhere, poor eye contact, severe rages, sensory issues,poor social skills, hand flapping, toe walking, repetetive play, repetitive speech, food aversions, spinning objects and lining up toys. The list goes on and on. However recently he appears to have made some excelent progress and I do not know if this is due to all the support and intervention he has had or whether the autism diagnosis could be wrong.
His speech has improved dramatically and he now has around 100 words, lots of learnt phrases/monalogue which he mostly uses in his play, for example; up a hill, on the track, tree on track, oh no its a disaster, in the water, under the table ,oh no what happened, it fell over etc. He has recently also began to form his own independent sentences, for example; get out, milk has finished, wheres find, coat on,telly on,wheres the ball gone.is a baby, light on,time for dinner etc. People often remark on how well his speech has progressed and it sounds quite mature at times  however apart from making requests or commenting on his play, he does not use speech for any other reason. He cannot talk about past/present/events/people /his feelings/likes or dislikes etc and cannot respond to questions including his name. If you ask him his name he repeats name, if you say whats the colour he will repeat colour.He has however since repetetively watching mr tumble on tv, started to use yes/no, altough often he will say yes to something you know he does not want.
His receptive language has improved and he understands some simple instructions such as, sit down, time for bed, wheres shoes gone, clap hands,give to daddy,wheres ? but nothing more complex than that. He cannot hold any form of conversation.
His attention has improved and he loves interacting with adults especially through song which he picks up very easily, hes always singing, he loves rough and tumble play, bubbles,cuddling on his terms,listening to a story over and over. However it is still very much on his terms and if you stop he will rage and try to force you by grabbing your hand.He does not say hello or bye without prompting.He finds transitions difficult. He does not interact with his peers and tries to avoid them. He tries however to play with his 18 month old cousin but does so inapropriately by constantly grabbing her,poking her eyes or getting too close. He does not recognise when she is getting upset/angry with him and even when she hits him, he just thinks its funny.He walks over people. He reacts severely in social situations or where there are alot of people and will get very distressed, or have a meltdown. Busy shopping centres etc are particularly difficult.
He still flaps his hands when excited or overwhelmed and jumps up and down.He also opens his mouth wide, toe walks and also when anxious will repetitively open and close his hands.
His play has improved and he is beginning to engage in some pretend play although much of it has been previously modled by an adult or coppied from tv, but not all of it. It also seems to be very repetitive, although if you did not realise it appears normal at times.
His eye contact has improved although not consistant, better when he engages rather than if we try to gain his attention.Sometimes he gets too close.
He is receptive to new ideas in his play although if playing trains for example would get very cross if you touched one of his trains.He cannot play with another child at all.
His overal development is around twelve to eighteen months and he also has difficulties regarding his balance/spacial awareness etc.His reactions are often severe and out of proportion to the situation. He has meltdowns and willscream hysterically, headbang,bite,pull hair,kick, throw every thing in his path, attack people also. I often have to restrain him. He also has no regard for his safety or that of others and needs constant supervision.
However if you didnt know about his difficulties and he was having a good day ,he could pass as a typical child, it isnt always obvious, especially when he is in his home environment. I do not know if autistic children would be expected to speak as well as my son and interact as well, or would he just be considered high functioning.None of the children at the centre he attends talk as well as he does and some are older.
Please can you give me an honest oppinion .Many thanks sharon

Answer
Hi Sharon
As you know, I am not allowed to diagnosis any medical issue, and therefore, cannot tell you whether or not you son has autism. But since you have had professionals in the field diagnose him, then I imagine they are correct.

i am thrilled to see that your son is making tremendous progress. However, he still has a lot of issues in the areas of language. socialization and behavior that are still in line with characteristics that we know as a developmental delay or autism spectrum disorder.

I suggest that you read the letter you just wrote me. It is chocked full of descriptions of a child with a large degree of developmental delays. Then pretend that this child was not yours, but a child that you did not know. Ask yourself if you would think that this child is in the autism spectrum. Perhaps that level of objectivity is what you need to be able to accept what your child is demonstrating.

I know that it is a very difficult thing to accept this in your own child. But the progress that he is making is fabulous. With continued intervention, I am sure that your child will continue to improve on all levels.

I applaud you for moving forward with all the therapies eventhough you have been struggling with the diagnosis. Other parents often can't even get to the point that they go to get their child help.

Thank you for writing again. Feel free to keep in touch. I know its a hard journey. But I know you have the strength to take it