Regressive autism - first-hand views

ADAM FEINSTEIN, Editor of LOOKING UP, whose ten-year-old autistic son, Johnny, lost all his speech at around three years of age, now feels that, although he seemed to be developing normally, the language Johnny was employing before he lost it was not normal: it was asocial, used to imitate or to label objects rather than to share attention. Your Editor asked parents of other autistic children around the world for their own views and experiences

MY FIRST language is Russian. My daughter, like your son, was using language to label, not to make whole sentences. However, she was always trying to create social interaction. It meant, for instance, that when she pointed her finger at an apple and said “apple,” she always turned her head to seek my eyes and to make sure that this was the correct word. She was always curious to find out whether I had something to add (like, “Yes, good apple. Red apple”). Also, she liked to answer when somebody else pointed at an apple and asked: “What is it?”

Since English is not my native language, my daughter developed two languages simultaneously at 10-12 months. She lost her speech and eye contact at 14 months. That was two months after she received the MMR (measles, mumps, rubella) vaccine but I am not sure whether the MMR jab was a major offender, or maybe just a contributor.

It is very sad that the medical community labels children like my daughter “autistic,” because this is very misleading. The “new” autism has nothing to do with a “classical” autism, which is recognisable practically since birth and is very likely to be genetic in nature.

I REALLY believe that my granddaughter, Kayla, was born with autism. Even as young as three months, she was strange. She had no eye contact with people, very poor sucking ability, cried for no reason.

She was born with a 2q chromosome deletion, which I believe caused her autism. She started making sounds at the age of three. At nine, her vocabulary consists of things that pertain to her and what she is interested in. She loves trucks and knows the colour of the truck and the name of the person driving it: “Steve-blue truck,” “Kurt-red truck,” etc. She knows the names of stores like K-Mart, Target, etc. She is trying to use sentences, such as “I want to eat.” She is a long way from holding a conversation. She does repeat some words excessively, like “bus coming.” She will say that 100 times before the school bus comes.

I HAVE a six-year-old autistic son. He never developed language properly. At 18 months old, he started speech therapy. He could only say maybe a half dozen words. Like your son, it was mostly to label items, not to initiate conversations.

He also had his “own” language - for lack of a better word. It was mostly jibber jabber (another clue something was not right). But you got the sense that he knew what he was saying. Now at six, his language is much better. Strangers still have a hard time understanding him. He still tests at about a three- or four-year- old level. Conversations consist mostly of memorised or rehearsed speech. Everything has to do with his latest obsession with cartoons or movies.

In my son’s situation, the language was never there to be “lost.” Therefore, the vaccine theory does not seem to apply to him. As I look back on it, there were probably other clues as well.

YOUR question touched my heart. I have an eight- year old son, Jordan, who has the PDD (pervasive developmental disorder) label. I find myself praying that I never forget his language before the label ever emerged.

Jordan’s language was on target until two-and-a-half years of age (six months after the MMR vaccination). I can remember him communicating socially and expressively, His language was appropriate and in some areas he was developmentally above his peers. He would call family members (mum, dad, aunts, uncles and grandparents) by their names. But his language never emerged to complete sentences - it amounted to phrases only. I have fond memories of picking him up from child care, and he would say “cookie momma cookie,” or “want fries momma.” He could sing the Barney song in its entirety, as well as other short children’s songs ( but it was through rote memory).

Oh, how I long for that spontaneous type of communication again.

IN MY case, I believe the autism was evident before my son was even old enough to speak. So I cannot say he lost speech.

I do think that it was a result of all of the immunisations together - starting from day one, with the dreaded Hepatitus B, and all the other poisons, until he was 12 months of age.

I stopped the jabs at 12 months, so Dr Andrew Wakefield’s theory about the MMR vaccine connection doesn’t apply to us. But what is interesting is that my son is very high-functioning and I think that this is due to his not receiving the MMR shot.

I believe that, in the case of the children who received the MMR jab - in addition to all the other shots - their autism was made more severe. I believe these children are building up levels of mercury since the first injection, usually the HEP B, and when it is finally time to have the MMR, that is when we see the autism start to manifest itself.

It is usually about the time our children should be speaking. So I feel it just takes about two years for the thimerosal to wreak havoc on the body - and it just happens to coincide with the MMR vaccine.

My son finally started to say his first words at the age of two. He first started out sounding echolalic, but my speech therapist assured me that this was how children started to learn how to speak: they repeat words, then start to say the words spontaneously themselves. Luckily, this was true for us, but that is not always the case for other children.

I initially facilitated my son’s speech by using the picture communication system (PECS). It did wonders for my son.

He is now three-and-a-half and has conversations with me. He tends to interrupt a lot, which can be considered age-appropriate, but if it continues and it becomes a social problem then we will address it in our home programme.

He doesn’t memorise any scripts from movies and say them inappropriately, like some children do, but we do practise certain play scripts when we teach him play skills involving Bob the Builder, or when we play doctor. It has worked beautifully, because the teachers at the typical pre-school where my son goes, two mornings a week, tell me that he has generalised these skills and is using them in class with the other kids.

Even though he seems to memorise the appropriate social skills, especially from my seven-year-old daughter (whether they are good or bad), he seems to perform them appropriately, in the right context and with fluency. So yes, sometimes we have to teach social skills, but if they are carried over into his everyday life and in the right context, what more could I ask for? I think I am very lucky.

I BELIEVE that my son’s autistic behaviour started in the womb. He was extremely active. I believe that he was mercury-poisoned in the womb because of two of my silver fillings breaking during pregnancy. The mercury poisoning continued after he was born: I had my fillings fixed soon after I gave birth and breast fed for six months, and he received all his vaccinations on schedule.

Like your son, he developed speech, but not language, although he did learn some four-letter words which he used appropriately. I remember once, when he jabbed his toe against some furniture, he swore: “Oh ****,” appropriately (or not!) - and his three much older, “normal” siblings thought this was so cute.

His special skill was that he could identify and name a multitude of hockey and baseball logos. Between the ages of three and five, he stopped learning more words and started losing the ones he had learned. The last word he used consistently was “Mummy.”

Until the age of five-and-a-half, his diagnosis was Developmental Language Disorder. The “experts” saw no other sign that he was autistic, but knowing what I know now about autism, there were many signs. As an infant, he stared at the ceiling fan when it was on. As a toddler, he lined up dozens of his little cars and ensured that they were all facing forward. He imitated certain sounds with great accuracy, like the sound of a car passing, sounds that normal developing children might ignore or tune out.

The time-lines are different from your son’s, and unlike many other parents, I don’t only blame vaccinations as the source of his mercury poisoning, but what is interesting to me is that the autism in my son took so long to become obvious. There was a definite point at around five-and-a-half when my son’s behaviour totally changed. I took him to emergency twice that summer because he would scream and hit his head for no apparent reason. That was the first time that I got a hint from a doctor that he might be autistic.

After that, his behaviour was out of control: aggressive, destructive, mood disorders, hyperactive, verbal stimming and hand-flapping. His behaviour changed completely in a matter of weeks.

Brandon is now nine, and with the help of diet, supplements, ABA [applied behavioural analysis] and a good doctor who specialises in environmental medicine, his behaviour has improved. Sometimes he says a word, like “go,” “no” or “Mum,” but not consistently. We also trying chelation therapy to detoxify the mercury and lead that are in his body, and so far we have seen a definite improvement in his gastrointestinal function. I am optimistic that we will see more improve-ments along the way.

MY SON did have some language until he lost it at around 17 months. Like your son, he tended to use labels (in fact he said his first word at seven months). However, he never pointed (particularly protodeclaratative pointing) until he was over two.

He has slowly regained language but his speech sounds are now inaccurate (he’ll be three next month). Before he lost language, he used to say “Dad” - now he says “daheen.” Likewise, Grandad used to be “ganda” - now it is “a-an.”

In my son’s case, I tend to think there was a genetic predisposition. He had either chickenpox or eczema herpeticum at around 11 months and it became horribly infected. Besides steroids and acyclovir, he was given three courses of antibiotics in three weeks (including ones which are not supposed to be given to children under two). I think this gave him a leaky gut, as it was after this that he started eating bread, bread and nothing but bread. Then at 16 months, he was given the single measles vaccine. One month later, he stopped talking, started singing and here we are. So I think a combination of factors have been involved.

MY SON, Alex, who is now 15, appeared to be speaking normally until about 18 months. He passed his two-year-old physical with flying colours, and called out “Daddy!” when his father came home from work. Soon it seemed as though he had hearing problems.

He kept or regained the language he had acquired until that point, but the words are mostly labels, although he has hundreds of labels. Looking back, he never had a “question” word (who, what, when, where, why?), a complex phrase, or words which conveyed emotions - although he does have the emotions.

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