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Date:         Sat, 25 Jul 1992 16:22:00 +1000
              <AUTISM@SJUVM.BITNET>
From:         LNCJB@CC.NEWCASTLE.EDU.AU
Subject:      Re: Losing speech.
X-To:         AUTISM%SJUVM.BITNET@pucc.Princeton.EDU

I've got a little behind ...(not what my daughter told me this morning! :-))
....with my responses as the result of Helen being off school this past week,
so I have made this one multiple replies.

On Thu, 23 Jul 1992, Ray wrote:

>    There is something else too though that I have always wondered about.
>It often has been said that Autism usually appears early in age usually
>within the first 2 years.  I beleive I have heard of some exceptions to
>this, but it does seem to be a trend.  What I wonder about though is if
>most people feel that things are going right for a certain length of
>time and then things seem to get more difficult.  For us it seems like
>birth to about 4 months seemed to be OK but then after that things began
>getting difficult, more crying, first time milestones were not being met.
>Before that everything "felt" quite right or normal [...]

Comparing my children with normal children from birth, they actually appeared
to be well-advanced in all developmental stages - lifting their heads (Tim
did this at 3 days old, so the nurse in the hospital's nursery informed me...
he lifted his head to cast a scornful glance at the baby in the next crib who
had awoken him with his crying); sitting unaided; crawling (actually only Helen
crawled, but only for two weeks at 6 months); saying their first words; and
walking between 6 and 8 months, except for Chris who didn't crawl or walk until
14 months (but he has never been fond of any type of physical exercise - I
think he gets enough moving around while he is talking. :-)). Tim was the only
one who didn't show any language acquisition problems....he was talking
fluently at 18 months. However nothing I have read in the literature about
the various 'normal' stages of language acquisition over the last 17 years of
studying linguistics seems to describe any of my children's language
acquisition stages.....particularly those involving syntactic and phonological
milestones which are reported to follow a fairly regular pattern. For instance
not one of my children over-generalized the past tense rule and some of the
'easier' phonemes appeared much later than expected and after more difficult
ones had been mastered (Chris was able to pronounce 'th' before he could say
't').

In a later article Michael wrote about David:

>What is also great is that it unlocks our understanding of his receptive
>language.  He's doing very well at reading at school - just plowing
>through a computer based reading system they are using with him (he
>seems to get board with some of the lessons so they skip ahead).

I'm not surprised that David is doing well with his reading, this seems to
be characteristic of autistic children, if they are given the opportunity to
learn. The language problems seem to be of production not reception. I know
how frustrated I get with myself when I can't say what I want to say and it
all comes out garbled, but at least I can always have another attempt at
getting my message across.....I can only surmise what the level of frustration
must be for the mute autistic child who hasn't had the opportunity to learn to
read or write using F/C or any other means.

>He also seems to have some basic number skills down too.  He can add very
>well and so some subtraction.

Mathematical abilities in my family are positively correlated with the degree
of autism. The most 'autistic' are the best mathematicians. Helen is
learning her 'times tables' now having mastered addition and subtraction.
More complicated mental arithmetic is sometimes a problem for us though
possibly due to some type of short-term memory deficit.

>David and I have a way of "reading books together".  I sit with him
>and hold his hand.  I read the words aloud and he points to the
>word as we go along.  He seems to like this.

I did this with Helen when she was in her 'mute' stage (and after). It was one
of the few things she liked doing with me and I'm sure that this was how she
learnt to read early.

Then Leo wrote:

>Our autistic son (also David) now 13 also lost some words he learned
>earlier but  with no apparent correlation with his life events. I do
>not buy though this story aabout good and bad genes (Dr. Jectyl and
>Mr. Hyde). I am angry because the bad genes took over than I am good
>again because of the good genes. Is that how it works?

No, that is not how it works? (Although I have often been described as
having a Jekyll and Hyde character. :-))  By 'bad' gene, I was thinking
of a gene that was meant to initiate the production o'something' but
instead either failed to produce it or produced something that wasn't it.
That's still muddy, isn't it? Perhaps that 'something' might be an enzyme
or other substance that is required to take the neural development to the
next stage......(Can you clarify this for me Pat? I know you are lurking.)

>Then apparently
>David's bad genes are taking over now. Like other autistics he always
>liked to stick to routines and paterns but now he is inventing more
>and more of these. For example, he gets very unhappy now if he happened to
>put his shoes last (he does not want to put them on first
>either). Recently he is unhappy if he thinks he is walking out
>of the room (any room) last and so on. He is unhappy all day if
>he wakes up after seven am. So very often he would wake up at 6
>or 5 or ealier and spend all the time staring at the clock. The
>problem is to figure out what is for us to do: give in to these
>and possibly promote these and others or fight and make him very
>unhappy?

I've been through this with the boys and I am going through it again with
Helen. You have my sympathy! Usually what I do is try to humour them out of
their mood. If that doesn't work I introduce 'rights'....."you have the right
to be miserable if you want to be, but I have the right to not to have to
watch you being miserable - leave my 'laughing' room and come back when you're
feeling happier!" We have a rule in this house that no-one is allowed to cry
anywhere except their own bedroom and no demands are made to make them leave
their bedrooms - they must come out of their own accord and in their own time.
Helen's record is ten minutes, but Tim lasted two days once before his hunger
got the better of him. When I am feeling unhappy I just want to be left alone
so I presume that is why this works with my kids. I often feel miserable for
no apparent reason and at such times even the slightest thing will set me off
(I suspect hormonal imbalances are the cause). At David's age I think this is
a distinct possibility.....Could he be getting unhappy to changes in routine
because he already feels 'unhappy' and is just using the routine changes as
an excuse to explain how he feels?

Jean wrote:

>Hi Carolyn - There is an autistic child in our town who lost speech. She
>lives in a bilingual household and had a vocabulary of about 200 words
>in both languages at around 18 months.  When her folks moved up here she
>started to lose her language and was completely mute within a couple of
>months.  She is 5 now and still doesn't talk, although she has started
>using f/c.

It will be interesting to see if she regains speech after using f/c for
a while. I suspect that Helen wouldn't have regained her speech if she
hadn't learnt to read.....learning to read taught her to talk.

>   At her keynote address for the Syracuse conference on autism, Temple
>Grandin specifically mentioned an autism pattern that she called "late-
>onset regressive" [...]

Thanks Jean, I hadn't heard this term before either.

>   Good luck in your struggles with the school bureaucracy!

I've started on the High School now over their school uniform policy...but
that's another story. When I'm in a fighting mood, I find it difficult to
stop, but it's their own fault they will keep supplying me with ammmunition.:-)

I greatly appreciate the comments from Lisa, Ray, Herb and Dan as well.

Would any of you mind if I make a copy of these posts relating to loss of
speech and pronoun reversals to show to Helen's neuropsychologist?

Carolyn
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