Saturday, June 05, 2010

I Will Not Cower In Fear, I Will Honor My Son by Speaking the Truth About His Autistic Disorder and His Intellectual Disability

As expected I received more flak when I posted another comment about the CDC Autism Expert Dr. Yeargin-Allsopp's comments confirming that 40% of all persons on the entire autism spectrum also have an intellectual disability.  Dr. Yeargin-Allsopp's comments also mentioned that an overwhelming majority of persons with an Autistic Disorder diagnosis also have an Intellectual Disability. Given the 40% figure for the entire spectrum, which includes all those persons with Aspergers who, by diagnostic definition are not intellectually disabled, the expert's comments confirmed my previous comments and sources that approximately 80% of persons with Autistic Disorder also have an Intellectual Disability.  I am just a humble layperson but an 80% "co-morbidity" rate between two closely related conditions suggest to me  very strongly hat they are in fact one condition which has been artificially separated.  Also as I had expected farmwifetwo was particularly harsh in her comment in response. Speaking about her own child she finished with a shot at me:

"But again Harold... What's the point to the rant...

Do you want those with Autistic disorder like my youngest to be written off from day 1 with "well he's just retarded anyways so why should we bother teaching him
". That'll defeat all the work you've put in to push for ABA to be paid in full. The gov't's will say "why bother", let's just toss the money into facilities and raise them like animals... Which is what they use to do. Or do you rather listen to the Ped, the special ed dept, the Psychometrist and something the Teachers and children have all discovered...

He's not "retarded", he's "autistic"... "retarded" only gets him funding and placements. Autistic, gets him educated. Unlike some... I'm not writing mine off at 8 as it's appeared you have at 13... There's a lot of living and learning still to do btwn now and the day we die."

farmwifetwo, June 4, 2010,

Although she is harsh in her writing style I don't believe, from what I have read of FW2's comments here and elsewhere, that she intends to be hostile. I think she is passionate about fighting for her son and I respect that. She is welcome to post here and to continue doing so.  On occasion when I think she has gone over the top I will not publish her comments but generally she does not go too far.

I believe that FW2's comments reflect fear, fear that her son will lose all if he is labelled as intellectually disabled or mentally retarded. I understand her fear but I believe nothing is gained in the long run by hiding the truth about our children's disabilities.  I have no doubt about the severity of my son's autistic disorder and his intellectual disability.  They are part and parcel of the same condition.
 My son is now 14 but I realized long ago the full extent of his diagnosis. He was diagnosed at age 2 and he was also assessed shortly thereafter by New Brunswick's leading specialist in childhood autism, clinical psychologist Paul McDonnell.  His full diagnostic assessment has, for many years, been "autistic disorder assessed with profound developmental delays". I am a lawyer but you don't have to be a lawyer to know what "profound" developmental delays means. As a father I have seen those profound development delays every day of my son's life.  I have no choice but to speak the truth or forever cast myself as a liar. Acknowledging his intellectual disability has not kept me from fighting , at times ferociously, on his behalf and on behalf of other autistic children in New Brunswick. I do not write off my son or any other autistic child with, or without,  intellectual disability.   It is those who pretend that every autistic child is another Dr. Temple Grandin in waiting who write off our autistic children by creating a false public image of the challenges they face.
We do a disservice to our intellectually disabled children by recoiling in fear from speaking the truth, from telling the world the full extent of their challenges.  I will not cower before the stigma that so wrongly accompanies intellectual disability.  For me, that also means acknowledging that when 80% of persons with Autistic Disorder also have an Intellectual Disability that the two are not just related conditions.  They are part and parcel of one neurological condition that has been artificially separated.

Autistic Disorder and Intellectual Disability separate disorders? Sell that bridge to nowhere to someone who hasn't already crossed the river and seen the truth.


Adrianna said...

To be honest, I don't think being passionate is an acceptable excuse for not reading or for distorting comments, not understanding or denying the research, or slandering people's character. If anyone doesn't like what you've written they don't have to come here, and I'm really tired of people piling on people who say things they don't like.

If FW2 doesn't understand the research or how research is conducted, that's her problem. And she's got a lot of nerve complaining about being silenced when she is all to eager to silence those who aren't like her. She seems to think it's all about her. Her kids, what a good parent she is, etc. There is no excuse for that and I have zero sympathy for any "passion" anyone might have on the subject if that's what you do with it.

Great that she (allegedly) is succeeding. What about the other people for whom success is limited? How can we possibly help them if we don't acknowledge the facts?

And when will people stop bringing up the issue of IQ? You don't NEED an IQ score to know if someone is ID or not.

Most people with autistic disorder ARE intellectually disabled, and the sooner we acknowledge that, the sooner we can help them.

I read once that men are more likely to geniuses than women, but also more likely to be mentally retarded than women. This is because part of the brain is enlarged. If we could find why that part of the brain is enlarged then we can treat ID. Since autistic people tend to have enlarged ventricles and macrocephaly, it would make sense that the two are connected. It also explains why autistic disorder is more common in men than women.

Claire said...

I do not understand the concept of those with intellectual disabilities being "written off". My daughter's cognition is all over the one has ever "written her off"...nor the kids with Down's nor the kids with global delays. There are always challenges in dealing with the school system, that's certain, but if her experience with that system is one of children being denied some sort of education that is appropriate to their needs and abilities, then someone needs to complain and set things straight. My daughter was also visited by a psychometrist, who promptly and correctly told me, "She'll bottom out in all my tests, but obviously, there's lots to work with there". We proceeded to identify what she could do and what she could improve upon. That's the point, isn't it? I'm with you, kid has profound intellectual disabilities. That's a fact, not an embarrassment. Nor will anyone ever write her off as long as I'm alive.

Stranded said...

I support the truth too Harold. There is NOTHING wrong with knowing your limitations and accepting them. There is a difference between, believing you can push your abilities to their limits, and deluding yourself that you can do everything.

Khaled has a developmental delay and for sure cognitive impairments - they are part of his AUTISM. Autism gave him those disabilities. The amount of money we spend on his learning and the effort that goes in from ourselves every day is proof that we have not written him off. Time will tell though, and I continue to draw strength from older parents who have been in the running for so much longer than me.

AutisticWisdom said...

Hi Harold,
While I agree 100% that the truth should be said (80% co-morbidity of ID with autistic individuals), I am not sure I agree with including it in the DSM-5 as diagnostic. While it may be worth putting something in the DSM-5 to say that autistic disorder is highly correlated with intellectual disability, there are kids (like mine) who have severe autism but are not necessarily intellectually disabled (she may just be, but I don't know yet). 20% is still a significant minority and one must also know that individuals exist who have intellectual disability but no autism (very social people with good communication skills but lacking in IQ and adaptive functioning.)

I do not think Asperger's Syndrome should be blended with autism, because although autism and Asperger's are both related disorders, I worry that people will see Asperger's as autism, when we both know autistic disorder and Asperger's Syndrome do not look the same. It is very rare in the media to see autism portrayed realistically; if it is mentioned, the individual is almost always has Asperger's Syndrome.

Ian MacGregor said...

Interesting use by Kwombles Yeargin=Allsop et al to argue that intellectual disability is not a problem for those with autism. According to the study about 68% of those with autism had some form of ID. If you were to see one person a day from the human population as a whole it would on average take about 44 days to find some with ID. If you searched people with autistic disorder it would take a day.

Ah but half of those are mild MR. There is a big difference in being simply mild MR and mild MR stemming from autism. The child without autism will be much more keen to learn, and has a far better chance of independence.

The Yeargin-Allsop study suggests it would take about 7 weeks seeing one person with autistic disorder a day before you ran across someone who had profound MR. It would take about 10,000 years in the human population as a whole.

These estimates are ballpark and based on the number of standard deviations from the mean which the definitions of the different levels of MR approximate but do not exactly match. Corrections are welcome.

I don't understand the argument that if you state your child in intellectually disabled that you have given up on him. Parents don't give up on their children children no matter the odds. Those of us with children who have ID don't lock them away, or
stop trying to teach them. We do however know the odds and hope and pray for a breakthrough for our children.