Autism Awareness Month:
Autistic Children Become Autistic Adults
October is Autism Awareness Month in Canada. As a father of an 18 year old son with severe autism disorder, profound developmental delays (like 50% of the autism spectrum according to the World Health Organization) and seizures which also affect many with autism I can tell you from personal experience that autistic children become autistic adults. Enjoy your child's early years and student years but do not forget that they will grow up and many will need enhanced adult autism residential care and treatment.
With other parents of autistic children I began advocating 15 years ago for evidence based early autism intervention. Like those other parents my son did not receive the early intervention services which many autistic children in NB now enjoy. We knew it would not be put in place in time to help our kids, but it was the right thing to do, to advocate first for early autism intervention. We also advocated for autism trained TA's, education assistants, whatever the term du jour is now, and my son and others did, and still do, benefit from our advocacy as do many other autistic students in NB today. We may have been the early "wave" of parent advocates but we are still part of the picture today particularly in advocating for adult autism care and we ask you to join us but do not make the mistake of thinking we will "step aside". Parent autism advocacy is not a "wave" it is a life long necessity; a life long commitment ... for all of us.
Absolutely no progress has been made on adult autism services and I ask parents whose children enjoy the benefits of early autism intervention and student autism services to think ahead and help advocate for the adult autism services our children need and many of your children will also need. Some have already started advocating for improvements in early intervention and improved autism education services. A group has also started a petition and joined the fight for an enhanced autism group home system around the province, as described in 2010 by Professor Emeritus (Psychology) Paul McDonnell, with a residential care centre for the most severely autistic, a centre which would also include professional expertise to assist the regional group homes.
The online petition is a good idea and I urge everyone to sign the petition. I also ask you to consider sending a personal email, fax or letter to your MLA. I believe, based on my 15 years of autism advocacy, with the ASNB, personally, and as a legal advocate for some autistic students, resident of a group home and an individual who resided in the Psychiatric Hospital in Campbellton for 4 and 1/2 years, that the personal mail/email communications will carry additional weight.
Whatever you do enjoy your autistic child as he or she grows and develops, as you would any child, but please do not forget that many of your children will face complex challenges throughout their lives and will need you as their advocates for as long as you can be of assistance. We can be of assistance to each other if we work together selflessly and for the benefit of our autistic children, adults and family members.
Respectfully,
AutismRealityNB@gmail.com
4 comments:
Hi Harold, Thank you so much for your post. Indeed, we often read and hear about autistic children but autistic adults are often forgotten and their needs not addressed. All our autistic children will grow to be adults some day and something needs to be done to address their adult needs.
You mentioned an online petition but you didn't provide a link to it. Could you please post the link. I would like to sign it.
Hi harold i am a legit high functioning autistic with nf1 genetic disease and the services are bad for autism adults here in southern california. Wait list for housing long and ssdi gives little money like 1000 and rent 750 for one bed apartment. Group homes only for.bad case i wad denied. Sheltered workshop are few and supported employment fewer. Thanks for your fight for autism
Perhaps it would be better to have a facility for adults with profound intellectual delay with or without autism. The criteria of having autism alone would be too restrictive.
Thanks for your comment Anonymous 4:28. You assume though that the facility would be for those with autism alone. That is not the case. Autism is now known to be marked by great heterogeneity. NB has a general group home system where some with autism now live. The homes are are classified by level of severity of the functioning challenges of residents. The same would be true in the group home system with those who could not function in the group homes at any level living in the adult autism residential care and treatment facility. Those living in the facility might be some who do NOT have an ID but many WOULD have an ID.
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