Monday, May 25, 2009

Autism's Invisible Adults in New Brunswick

Much progress has been made here in New Brunswick (Canada) to help autistic children over the past 6 years. Despite substantial advances for autistic children though almost nothing has been done to improve the lives of autistic adults here in New Brunswick.

Many problems and gaps in service delivery for autistic children still exist but we do have government funded early intervention for autistic children with service provided by staff trained at the UNB-CEL Autism Intervention Training Program. UNB-CEL has also begun providing autism specific training Teacher Aides and Resource Teachers. ABA is used in our schools, my son has received ABA based academic instruction for 4 1/2 years. Accommodations have been made in the form of differentiated learning environments. My son is instructed in a small room separate from the mainstream classroom at our request and visits the mainstream classroom, the gym, the pool, the kitchen and the grounds for various activities that exposed him to other children who regularly greet him during my visits.

Government, the media, the public, autism organizations and autism advocates, we all ignore too often the needs, the realities even the existence of autistic adults particularly the severely autistic.

Out of necessity in New Brunswick autistic youths and adults in need of extra care and attention have been sent out of the province, even out of the country, to receive treatment. Autistic adults have lived, and continue to live. in psychiatric hospitals, at least one has even lived on the ward of a general hospital in Saint John. An autistic youth was kept on the grounds of a youth correctional centre in Miramichi New Brunswick until an opening could be found for him at Spurwink a facility operated by our good neighbors in the state of Maine.

New Brunswick's autistic adults need an autism specific group home system. The current system involves placing autistic adults in need of assisted living in general group homes with no staff specifically trained to address the needs of autistic adults. One such home closed with only 24 hours notice.

The most pressing need for New Brunswick's most invisible autistic citizens, the severely autistic is for a multi-level residential facility which could also provide treatment or proximity to treatment. I have visited the Restigouche Regional Psychiatric Hospital in Campbellton New Brunswick where some of New Brunswick's severely autistic adults live. I was very impressed by the management of the facility. It is a necessary residence for some New Brunswick adult autistic persons because of the absence of a modern autism specific residential facility. But it is not the home I would want for my severely autistic son when I am dead or otherwise unable to care for him. Nor do I want if for other severely autistic adults as they age.

Autism is a spectrum of disorders. The spectrum aspect though is often ignored .. by all of us. The adult, aged autistic element is also ignored ... by all of us. Here in New Brunswick we need a multi-level autism residential facility, centrally located, with access to other autism specific resources available in Fredericton to provide expertise to assist in the operation of the facility.

Autistic adults, particularly the severely autistic, need such a facility in New Brunswick now. The truth is they needed it years ago. We can't change the past but we can make a future different from that past. If we start NOW.

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Stephanie Lynn Keil said...

Yes, you better start signing up Conor for adult services now or he'll be in the autistic services limbo like I am. That is how long it will take to get services for an adult.

It's frustrating, especially since many people with HFA/AS CAN be helped and CAN have a productive life outside of an institution (whether living at home, a supervised apartment or even alone) if they EVER get the help they need.

I can't earn a college degree or live in my own supervised apartment unless I get help and services. These services take years to get if I ever get them. I bet to get a supervised apartment the waiting list is over 10 years.

Everyone wants me to be successful but no one will help me. Then I get told I'm a drain on the system because I am not recieving any kind of help I actually need. It's not my fault no one knows what they're doing.

Stephanie Lynn Keil said...

I do think that Ari and Company do a good job for people who are high-functioning.

But they completely neglect those who are severe and need more intensive care. Ari and Company actually believe that those with the most severe autism can live in the community with appropriate support. They cannot. And I wish Ari and Company would get their head out of the clouds and come back down to reality.

farmwifetwo said...

Community living sent out a newsletter with how residential care = going to jail. I did a WTF?? It's not the 1950's. In today's world residential care when one is a senior involves 24hr care, meals, outings and social activities.... why not the same for those with severe mental disabilities?? If one has severe disabilities and is in a group home with 6 people, there isn't the funding to do the extras. With 25 or 50 people there's a bigger pool of money to use for the extra's b/c each person brings a long a little more $$$ from the system.

Stephanie's correct... it's a minimum of 10yrs for support here in Ontario. I have to put him on the list the day he starts Gr 9 and hope he's in the day he finished h/s at 21 and it isn't likely he will be. I don't want him here, and not b/c I couldn't care for him but #1 - I am entitled to a life and #2 - what if something happened to me - car accident?? disease?? etc.... Then what?? What happens to him if I'm not here to make certain it's OK.


Barry Hudson said...

Hi Harold,

I have a question for farmwifetwo (I do not mean to hijak).


Which CL organization sent the res = jail in their newsletter. I advocate in Ontario and would like to speak to this specific CL.

Thank you both.