Tuesday, November 13, 2007

Severe Autism Reality in New Brunswick - Heather R's Story

Heather R said...

Ihave a son who is 14 and severely autistic as well. I have had workers in my homw with him foe 2 years now. They told me it was sapposed to be only until we could get him some help. He needs an assesment and a medication overhaul where he went completly out of hand and uncontrollable during puberty. No hospital in n.b can take him. moncton refused him. I.W.K has been saying for the last year and a half the have no phycologist. I see a phycologist once every six weeks or so and we try something else. One of the medications made him bust through windows another gave him seizures. Right kow we have between 10-15 restraints were the workers hold him for from 15-40 minutes of tempertantrums.He wears a helmet so he won't poke out his eyes. Hockey shoulderpads so he wont bite his arm to shreads. He was bad when the workers first came with severe wounds up an down his arms but the hospital said it was no place for him, so we treated him at home. He also wears towels on his hands to prevent pinching and towels on his legs. My little boy is in crisis and we have no hospital that can even evaluate him. I have been waiting for help for 2 years,how much more can we wait. Sure they'll put him in a house if I can't stand it anymore but they would get him treatment.


Patricia said...

As a parent with an Asperger's child, I can only begin to empathize with this family. These families need help - NOW - yet it is still a side-stepped segment of society. One cannot understand the depth of despair and exhaustion severe autism brings about as the "symptoms" do not take a break at 5pm...or overnight. Canada has a responsibility to care for all of its citizens and to stop trying to keep the care of severely disabled on the family's shoulders and home.

Anonymous said...

I too have a teenage son with Asperger's Syndrome (and a preliminary diagnosis of co-morbid bipolar). Families do need help, but especially appropriate and trained help to improve the social functioning. Two questions always emerge. Are there any trained resources? It is evident the huge gap that exists between the Health system and the social (FCS) system. Why do these two departments not have a process for speaking together? For people with these afflictions what is required is a combination of health and social interventions, working in tandem and together... not the piecemeal approach where parents are left trying to navigate a bureaucratic system where it is evident the two departments do not speak to each other. I wish the early interventions had been available when I needed them, but I keep hope that perhaps we can develop something to help teenagers now... because there are more coming up though the system and they are getting older too.

Anonymous said...

From a dad from Montreal

I just came upon your site recently and the discussion regarding the " no real increase"

About a year ago I started to investigate this premise more closely.

With the help of one Americans and Quebec academic, we started to investigate in published academic literature for empirical study backing up this point.

To our surprise we found none!!!

Then we decided to broaden our research to include conferences:
The first statement we found regarding this premise was spoken at a Mind Institute conference where a Dr. E.Fombonne of McGill University did a presentation on this concept to the scientific autism community in early 2000.

In the process of doing the research, our little group of parents and academic decided that the only way to substantiate the premise was use to analyse two important data base that where available from Ministry of education and CDIR (Mental health service).

It is in the preliminary analysis that we realise very quickly that this premise was based, which at first glance seems logical and plausible, was in fact misleading and flawed.

The reason for the error in interpretation of the increase in the number of autistic children is largely associated to when the DSM-IV was actually implemented by the ministry of education and front line Mental Health services in Quebec or other provinces.

If you made the assumption that the DSM-IV was implemented in 1994 – 1996 period, then this premise would make perfect sense and explain the growth that we have seen over the last 10 years.

But there is a “ major Problem “ , when reading internal memo within the ministry of Health and Education , we see quite clearly that the application of the DSM-IV was introduce as a standard tool in 1999-2002 almost five years diagnosis after it was introduced by the scientific community.

This important shift in time line to when the DSM-IV was actually introduced in Quebec and other province has direct impact on how to interpret the stactical data.

As an example the data from the Quebec Ministry of Education ,we see quite clearly that from 2001 to 2002 , a change in nomenclature for autistic kids in our school boards , we go from a Class 51 ( representing classic severe autistic behaviour problem ) to class 50 kids ( representing Asperger , light autism , Ret’s , etc,etc…).

What is important to note, is when looking at the numbers that are readily available from the ministry, we see a jump of 100% from 2001 (class 51= 1500 students) to (class 50= 3200) in less than 18 months.

It when we start looking closer to data from 1994 to 1999, this before the DSM-IV is introduce in Quebec, we see the number increase from 400 (1994) to 1500(1999) , representing a jump over 350%.

This increase is massive, when we take into account that diagnosis of autism at that period was extremely limited. But what is more notable is when take a closer look at those 400 kids in 1994; we see that for the most part these kids are concentrated in the primary school age group and very little in numbers in secondary age groups.

This information clearly indicates that we are looking at very recent epidemiological event that seems to have started in 1987 –1989 period. This seems to be confirm by the CDIR data that gives a approx number 600 for the age group of 26 to 46 . When calculate the prevalence for this age group base on stat Canada birth in quebec we come to a ratio of 1 in 10,000.

This information is further validated is when looking at children born before 1985, It is important to note that in Quebec, the mental health services re-register, young adults when they become 18 years of age.

It is during these reviews with the mental health services, that young adults are re-evaluated for their handicap and behaviour problems and assigned the appropriate services and pension for handicap individual. It is notable to mention that after 2000 these organization where using the DSM-IV.

So for young adults that where born from 1982 to 1986 who are now ranging between 26 and 32 years of age and who would have been re-diagnosed under DSM-IV, this age group sees no major increase. It is only in the late part of 1987 to 1992 that number make a jump.

In more simple terms there where more kids coming up with autism in the period of 5 years (1987 to 1992) then occurred in the preceding period of 20 years (1967 to 1987), where yearly birth rates where almost double.

This tactical presentation is further confirmed by reality, if one takes a more common sense approach, let say using a prevalence calculation of 1 in 200 and calculate the number base on kids born from 1967 to 1997 in a geographic region (Ex: Montreal).

We know by using the data from Stat Canada, that over 800,000 approx where born in that period. So over this 30 year period should see approx 4000 young adults and adults. With both the ministry of education and CDIR Stats we know today about 40% of potential autism cases would have been severe.

Because these 1600 cases would have been easily identified or if not diagnose properly would have end up in one of 4 mental health institution situated on the island of Montreal.

The problem with 1600 individuals, is that there is presently not enough beds in either these hospital or the 15 group homes situated on the island to have receive that number and more importantly all four hospital are almost empty with less than 100 autistic individuals.

In conclusion all I can say Heather, if something sound stupid, it because it is!!!!! , your gut feeling was right on !!!

Pierre Morin
Montreal , quebec , Canada