Tuesday, August 31, 2010

The Autism Problem

The Toronto Star has offered a concise, to the point, editorial on The Autism Problem. The factual context leading into the editorial is the situation faced by Susan Fentie-Pearce mother of a 14 year old autistic  boy "who has become increasingly violent -- pinching, kicking, biting and pulling her hair out." Ms. Susan Fentie-Pearce claims that she sought help from her elected Member of Parliament who allegedly suggested that she should have her son charged with assault so that a judge could "order him moved to the front of the line." for placement in a group home. The Star avoided the he said-she said argument and focused on the need to for Ontario to deal with the Autism Problem and increase funding for group homes and autism treatment.

The need for autism specific group homes, with autism trained staff and  centers or  "villages" designed to provide a decent life for the most severely affected by autism exists in most Canadian provinces including here in New Brunswick.  It is not really a choice. We can either continue to dump the most severely affected by autism disorders in psychiatric hospitals and prisons or we can provide a range of decent autism specific residential facilities to accommodate their needs when their parents no longer can.

It is not a question of whether tax payer dollars should be spent on early intervention, autism specific education, community centers to assist parents or adult residential facilities. Autistic persons need help across the life span.  If we do not address our minds, and dedicate adequate resources, as a society, to helping autistic youths and adults live in decent residential  facilities, if we simply throw them overboard in choppy waters of difficult economic times we are not humane.


Autism Mom Rising said...

That is a sad story Harold, that the first reaction of officials is to have him arrested so he can go to a group home and that it is not "what is going on inside t his person's body to make him so aggressive."

When my son turned four he completely changed. Went from calm, healthy to severely aggressive. For years I was told it was just the autism and there wasn't much I could do. After and pushing and pushing we finially talked someone into giving him an EEG and it turned out he was having Petite Mal seizures across his whole brain, and once they were adequately treated, the aggression stops. In how many kids does this go undetected? We only found out because we kept pushing the doctors yet many believe them, as we did for a while, that it's "just the autism".

Barry Hudson said...

Hi Harold,

This is indeed a sad report of the reality in Ontario for the more challenging cases. Even if a court orders treatment it would mean (likely) that either one in a treatment residence already (with similar challenges) will be evicted or one that has waited for a year or more will have their access to service further postponed. The MPP maintains that his vocalization of the idea was not a suggestion. Gee – I suppose this is just like the statement of Henry II towards Thomas Becket of “Will no rid me of this priest?” to mean nothing more than “Please give him some flowers as well as my best birthday wishes.”

This child has been on an “emergency” list since January – I guess the bureaucrats have a markedly different interpretation of the meaning of the word emergency that do I. The waitlist for ABA (called IBI here) was once called EIBI with the E meaning Early, with wait lists being between (now, depending on region) 2.5 to 5 years for ABA the E was dropped from the acronym simply to save the government from embarrassment every time they spoke about the program. During press meetings on the autism issue the first question from reporters was always “Why is the program called Early intervention… when you have to wait years to get it?”, the government response to the issue – change the name and say the best we can do is being done, they must have hired a marketing executive (or read a current rebranding article in a marketing magazine).

The Star editorial states the primary issue – increase in need has out paced funding. Three budgets running and nothing has increased for direct service. I see there are more six figure earners in the administration of autism programs this year but less spaces for therapy. I am not sure one bodes well for the other, an empire of bureaucracy and six figure incomes has been created directly at the expense of therapy and services (simple math in fixed budgets – more pay for the “system”, less therapy and services for those that make their income possible). In some political cultures (not ours obviously) this is seen as the most vile form of corruption.

Best Regards,

Stranded said...

I fear for the human condition. I know autism affects us mainly, but this apathy and lack of morality or personal accountability runs rampant in just about every sphere of life, in any government I look towards.

He is playing the con's game of "it wasn't me"

farmwifetwo said...

Barry, it's no longer EARLY intervention b/c the autism advocates demanded that everyone stay in it forever so there's no intake space for new children. There isn't unending dollars to fund everything... You want them for ABA, someone wants a particular drug, someone else wants a surgery only available in the US... Where does the money come from???? As is the biggest joke we have is the billion dollar full time JK and SK... but nobody, nobody is complaining about it... Just think of the services... Where's mental health, where's autism, where's Down's, where's disability in general demanding those dollars for those they care for... NO WHERE!!! Which is why I'll never give another dollar to Autism Ont or any other "organization".. they certainly don't care about meeting the needs of those they claim to represent.

One of those "be careful what you wish for" and now the ABA waitlist is out of control.

In this Province people expect everyone else to do it for them. There's a reason it's called a "Nanny" Province. A quarter of the parents at most are true advocates/teachers for their children. My FSW and the school personnel we've dealt with will all tell you. My SIL's school has 3 of them... no dx's and parent's that won't do the paperwork.. School's problem, parent's are doing anything.

So... I don't sympathise. I am working and working and unlike Harold I don't view my son's IQ score as proof of his actual intellegence... And he's proven time and time again he's much smarter than anyone with an IQ in the 60's. Next big fight will be to prove Harold wrong once more and mainstream him into highschool with support, instead of being stuck in an ID class and "trained". Luckily, I have a few years before we deal with that.

I've dealt with a high behavioural one - eldest... he dented another hole in the wall last week in their room... But we deal with it. The headbanging is few and far btwn now... atleast with PPM 140 he's learning social and behavioural skills and is keeping up academically - B's - in school and is mainstreamed and not in a behavioural classroom.

Parent's need to take responsibility as well. It's a team effort in raising these children... more group homes, more behavioural programs, more... etc isn't going to solve the problems.. It has to start at home and more parents, like AMR who posted first, need to demand proper services (general b/c a large percentage of us don't want the unending sit in a corner ABA crap our children had when they were small), for their children.

In the USA these children see neurologists and have MRI's... it's routine... why not us??

Barry Hudson said...

FW2 - your recall of history is not entirely accurate, advocates want ABA early and proper support in school (see the Wynberg decision, the judge states this clearly as the claim) the central issue in Wynberg was aging out and getting nothing. Also, it was the previous deputy minister that provided the reason for the program name change, not me.

A couple of tangents for the rest of your reply - Mental Health just had a Select Committee issue a report for the future of Mental Health (advocates and myself testified all over the province for 18 months, see the Queen's Park site for a copy of the report). This is where they were/are.

Not sure what full day JK/SK has to do with this issue but the electorate asked for it - it is political, parents like it since it reduces their daycare cost (obviously). Sure the money would be better elsewhere but as we come to an election year governments do such things (party is not relevant, it is the age old political tactic of electorate payola – if done close to an election the government hopes such is in the current memory as favourable to aid in re-election). Growing up in rural NS one thing that I knew for sure was that all roads get repaved every four years just before an election (all parties have done this for the 40+ years I can remember).

As for parents not advocating I see it and it is frustrating but such is not a fair blanket statement, I know many that advocate in my school and our school even welcomes advocacy for children.

I have read the many posts where you have vilified the ID issue but for SOME cases this is true, heartbreaking but true. I recommend you read This Boy Noah, the two follow on books and the most recent book by Noah’s brother Boy Alone – Noah is severely afflicted and at the age of 40+ is incapable of the most basic independent task save eating. All three books chart the attempts at therapy of more sorts than I have ever heard of and no results. This in no way means all on the spectrum have ID but it is a known thing (the debate is over %).

That your kids do not face this reality is great for them, comparisons to others based on the same expectation is not a reliable means of analysis nor conclusion (for example, not all nose bleeds means brain cancer).

Last item - my son sees a neurologist and we do series of EEG, Cat Scan [CT], and MRI. I got this simply by asking for a referral from our paediatrician. We have also seen a developmental paediatrician and did every fluid, DNA, and genome test that exists. We had to wait a few months but we get to see whatever professional we want, I simply ask. We will repeat tests on a regular basis for items that can medically change over time (for example, we do not need to test for Fragile X anymore, it is a one time conclusive test but EEG will continue).

Kent A. said...

In the USA these children see neurologists and have MRI's... it's routine...

Not true in my state, North Carolina.