The Wrights Speak
April 2, 2007 by Kristina Chew, PhD
Filed under Health
In an interview in the April 2nd TV Week, Bob Wright speaks on his long career at NBC and then, along with Suzanne Wright, on Autism Speaks. The Wrights describe their grandson Christian’s “regressive autism” and what being autism grandparents has been like for them more generally. From the interview, it does seem that Autism Speaks will be devoting more resources to biomedical “causes and cures” for autism. A few excerpts:
- Mr. Wright notes the main goal of Autism Speaks: It is “trying to make life better for people with autism, but really trying to get to the cause and cure.”
- Mrs. Wright notes that she first detected autism in her grandson, Christian. “And also getting grandparents — it was very hard for me to tell my son-in-law and my daughter that I really thought something was wrong. Nobody wants to be that messenger.
………
“And you can alienate your family by being that messenger. But I was willing to take the risk and [that's part of what we're doing with Autism Speaks -- raising awareness]. Much like AIDS was a taboo, even breast cancer, nobody wanted to talk about having breast cancer. We have to take the stigma off so grandparents, everybody, will feel at ease to talk to each other about it [if they think] there’s an issue going on with the child.” - Mr. Wright on the 80% divorce rate in parents of children with autism: “The child requires so much attention and the mother, regardless of whether the mother or the husband is working, the mother ends up being the one who has to quit and has to stay with the child and go through this period of developmental disorder.”
- Mr. and Mrs. Wright on resarching a potential environmental cause for autism. “……. this is very tough scientific work to do. It’s epidemiology and everything. There just hasn’t been the motivation on the part of the [National Institutes of Health] or the part of the CDC to be able to do this, much less the funds. And lastly, there is this issue of looking for biomedical markers, which is another way of saying let’s move away from the gene search, let’s look at conditions that we see and let’s look at the children who have these particular conditions, how they differ from other children. …
Suzanne Wright: “Something happened to Christian. Something happened to him.
Bob Wright: “We’re on a hunt. We’re going to be on a hunt for biomedical markers, which is not the same as a gene search. … I think we’re three or four years away from accomplishing quite a lot. That’s what I believe.” - Mrs. Wright at the end of the interview. “We’ve now merged with every major autism group in the country. So we are the largest. And I was just invited to Qatar by the princess and the amir [sic]because she is having a symposium over there for special needs children … and over there it’s taboo talking about this. ………. So … I’m going over there with the Ad Council and we’re going to give an hour of Power Point presentation. She’s going to let me show my movie. Only three movies are going to be shown and mine’s one of them. … It’s going to be very global, because it’s a global problem.”
I am a little puzzled by Mrs. Wright’s continued mention of the “taboos” associated with autism. Since our son Charlie’s diagnosis in 1999, my husband Jim Fisher and I have sought to provide Charlie with the best autism education and to help him as much as possible, and have been open and immediate about mentioning that “our son has autism.” And many others—-autistic adults, like Jim Sinclair, needless to say—have been working even longer to show that autism is nothing to be ashamed of; is something to speak up and out about. I am also puzzled as to why the Wrights do not make more mention of educating autistic children and of the pressing need for more teachers, speech therapists, occupational therapists, physical therapists, music teachers, and many more professionals who are trained to teach autistic children. Such persons have truly made the difference in my son Charlie’s life: I am so proud to see him playing the piano with both hands, while learning to read the treble and the bass clef as he did today at his piano lesson.
I also would like to note a few facts in regard to the Wrights’ statements. First, for most of Charlie’s life (since 2001), I have worked full-time, teaching college students writing, Latin, classical Greek, and classical civilization in northern New Jersey.
Second, I also wish to note that Tony Soprano does not, as Mr. Wright says, live in Livingston, New Jersey, but a couple towns over, in North Caldwell.
(When one is speaking about autism, it is more than important to get all the facts straight.)
I wonder if after she shows “Her” movie, there’ll be another spate of tragedies like in the US after it came out?
*vomits*
And…ah…last I checked ASA hadn’t merged with them. ASA is not exactly a friend to the autistic, but they’re also a major autism group.
They’re really not big on facts, are they?
I thought the same thing, “What’s ASA? chopped liver?” or is Suzie dear saying that they’ve swallowed up ASA, too, we just haven’t got the news yet. ASA is just as bad, in my opinion, but good grief, their they grandpa of autism orgs in the US, as far as I know, anyway. It was founded by Bernie Rimland.
I agree with you, as a parent of a child with autism, that we need more teachers and professionals that are trained to teach autistics children. I think we need more funding in the education of the autistics so that more people are able to access the kind of education opportunities that your son are currently receiving.
But I have to say I agree with the Wrights that unfortunately, there is still a stigma associated with autism today. Many people are still uncomfortable to suggest that their loved ones’ child may have autism. A good friend of mine admitted that when her sister told her concerns about her son, she did not talk to her for several months afterward. Some parents from the Center where my child goes are still not comfortable telling people that their child is autistics and they have been in this journey longer than I. I was surprised that some of them are critical to another parent who is very open about their child’s condition. This situation has to stop because there is nothing to be ashamed of having a child with autism.
Like you, I have been working full time since my daughter was born. However, the reality in where I live is that many mothers end up quitting their job to take care of their child. In my support group, for example, very few mothers continue working. Day care centers rarely take special need children, especially the ones who are severely affected. I know some who stop working because of this. Private nanny option is not affordable to most families. Autism education and therapies are also extremely expensive that many mothers with more than one child could not afford to go to work. And lastly, there are not many flexible jobs with flexible hours that allow mothers to take care of their child with special needs.
I never understand that bit about divorce. Why does someone having to stay home have anything to do with keeping a marriage together? I think it’s much more likely that arrogant feelings of dissappointment and inadequacy empower the drive to “free” oneself from responsibility.
People are inherently lazy. What they don’t realize and don’t care about is that their path of least resistance affects more than just themselves.
/pointing his finger at deadbeat dads gunning for trophy wives and lives.
If the are the largest and have merged to be so. Why are they not providing more assistance in the form of education and support to the families that need it?
There is a large number of children and perhaps adults as well who developed ‘normally’, that is:
reached all milestones,
were not “quirky” (not that there’s anything wrong with that! and who isnt quirky?)
and spoke “appropriately”, had “appropriate joint attention, social awareness, ability to go along with group” whatever the criteria is for so-called ‘typcially developing’ children
- and then BOOM! something happened and they really did regress into a state that shares some characteristics with autism. But these kids do not always get better with education alone, there is something else going on.
Once again, a book needs to be written -or a teaching documentary – describing the specific educational strategies that have helped children.
How does a child with fine motor issues learn to attend to play the piano? What reading programs work? These are not explosive subjects, but really are the answers families are searching for.
On the subject of autism and other communication disorders being ‘taboo’ – for some people it is taboo because of the stigma. I wish Autism Speaks could work on eradicating the stigma.
It also sounds like New Jersey segregates children with autism – and the ‘higher functioning” (disgusting term) receive more special fun programs. There is a stigma when it deprives children and adults of a full, productive life in their community.
In terms of mothers having to leave careers, probably true for many. I know that I could never have continued my work hours – 7 a.m. to 7 p.m. plus weekend travel and many weeks away from home – but I could not have done this and had children, period.
If Kassiane is reading this, I have to say I am so interested in your perspective and sense of humour. Thank you for taking the time to help educate the public. When you write about sensory issues it is really helpful to me and my child.
I find it interesting that the Wrights are concerned about the “stigma” of autism. Yet they produce stigma generating fundraising video’s about autistic children. Currently, Autism Speaks and the Wrights are responsible for a large share of comtemporary “stigma”. How delightfully ignorant of them.
What the Wrights have managed to do is to scare the hell out of the ignorant masses. No wonder it might make life more difficult for children and why daycares don’t want to accept them. If your only vision of autism is from Autism Everyday, a very well manipulated and choreographed piece of propaganda, your not likely to foster and understand the complexities of each child’s own individuality and how we all contribute to society.
Autism Everyday steals the human dignity of our children and autistic people everywhere.
christschool Says:
April 2nd, 2007 at 10:38 am
” If your only vision of autism is from Autism Everyday, a very well manipulated and choreographed piece of propaganda, your not likely to foster and understand the complexities of each child’s own individuality and how we all contribute to society.
Autism Everyday steals the human dignity of our children and autistic people everywhere.”
The Autism Everyday video tells the truth just as I tell the truth about my son’s severe autism. It is comments like yours which steal dignity from my son and other severely autisic persons. You prefer that children and adults with severe autism remain invisible.
You needn’t worry about Autism Every Day, or severe autism stories spoiling the public perception of autism, there will be many heart warming feel good stories about high functioning autistic persons in the main stream media and on neurodiversity sites like Autism Vox during the month of April.
Mr. Doherty,
My son was diagnosed with “severe” autism, there are other parents in my area that have refused to allow their autistic children to play with mine. Your disagreement is enlightening as to how two people can view the same diagnosis differently.
Contrary to your belief about me (wanting to hide children with “severe” autism), my son’s story is available for all the world to see. Having no experience with what you call “high functioning” autism, I find it curious that you can offer any opinion on the topic of “HFA” whatsoever. As a man with so called “HFA” I find it quite repulsive that you would try and divide autistic people into “camps” (good vs. bad). My so called “severely” autistic child has a higher tested IQ than I do. Does that make me severely autistic and him high functioning?
I do worry about Autism Every Day and how that has shaped the public view of children labeled as such. I’m Autistic Every Day and damn proud of it and I want my son to have the same pride in his uniqueness as well.
Mr. Doherty, I’m sorry but you SEEM mired in a world of despair. But, perhaps, that despair only comes from your own perception of the world and has nothing to do with autism. That is for you to figure out and deal with. I would suggest that you seek some counseling on your feelings, especially if the images from Autism Every Day represents your perception of autism.
Mr. Doherty, I just wanted to point out that there will also be “many heart warming feel good stories” about those with what you termed “severe” autism such as my son and your son both have, it being now officially Autism Awareness Month, on this site. As I understand, there is more than a little of the “heart warming feel good stories” type of account on the new Autism Every Day video too. I find your accounts of your own son on your blog truly heart-warming and thank you for sharing about him.
Peony, I know I have only been able to hang onto my full-time job because it is not the typical “9 to 5″ job. I am able to set up my teaching schedule so that I am physically on campus (in the classroom or in my office) while Charlie is in school; I then work a lot at home. One thing I would be very interested in Autism Speaks pursuing is after-school and daycare programs for special needs children (and in particular programs that were economically feasible). Such could make a real impact on a family’s life; I hope the Wrights will keep this kind of need among families in mind.
christschool
Save the pscyhoanalysis.
I am not “mired in despair”. In my area I have fought – successfully – for preschool funding for autism treatment by trained personnel, trained autism workers in our schools, fought to keep a tertiary care, neurological centre for autistic children open, fought for accountabilty in autism treatment delivery and I am now focused on adult and youths residential care and treatment. I fight to change things for the better I do not give up in despair.
As Ms Chew has pointed out I also take great joy in my autistic son and post comments and pictures about our many happy times on my blog site.
What I object to are internet posters who slam parents for talking honestly about the realities of their children’s autism and trying to make changes for the better.
As for your child’s low severe autism diagnosis. If your son is capable of writing and scoring highly on IQ tests then he, fortunately for him, has many abilities lacking in low functioning autistic children such as my son. There are people like my son living in institutional custodial care. Whether you like it being said on the internet or not that is the truth. In my role as a lawyer and as an autism advocate I have visited some of these individuals and I am aware of services in my province and country and the demands for such services for residential/institutional care.
Reality. Try it some time.
I can tell you from personal experience that the autistic child does not always factor into a divorce. And honestly he and I are both better off for it (less than two months until he’s back with me fulltime!) Although his behavior was used by his mom as a tool in the court battle to demonize me, but in the end now that he and I are both diagnosed she realizes that he is very likely better off living with me than her (she knows nothing about autism and has not put ANY time into learning about it.)
ALL of the sides of the story need to be told. Not just the one of the totally non-understanding parents who talk of killing their kids in front of them on camera. I’m sure that if more stories were told of those of us who are happy and healthy then the stigma would go away.
I have difficulty NOT subdividing autism into ‘camps’, since there are a variety issues unique to each ‘encampment’. Some children may have issues relating to self injurous behaviour; some may be dealing with different types of communication issues; some are hampered by sensory issues.
I realize that all are somewhat interrelated, but each has their own educational requirements and therapudic challenges. Having two daughters on different sides of the spectrum gives me somewhat of a microcosm of what is facing educators, therapists, researchers and government funding in general; the one size fits all approach is woefully inadequate.
High/Low; Mild/Severe, PDD/Classic; all have their hotbuttons WITHIN our community. How do we get past all that and classify people into relevent groups so that we can figure out what is best for each (especially in the arena of services and therapies)?
I think we need to scrap the Autism Every Day video and work on something like Autism Every WAY!
The Wrights REALLY contribute to stigma.
I mean, first “it’s courageous to talk about killing your kid”, then the articles of misunderstanding, and of course their continued efforts to avoid ANY autistic input? Come ON! (And Mr Doherty, do shut UP about the LFA/HFA designations. You seem to be the only person who gives a rip about them.)
I mean, 2006 was the first year since 2000 that I was given ANY crap about being autistic anywhere but on an airplane…and I’m very out and very noticable. I DO have pattern recognition skills.
As for playing the piano (Caroline’s thing) Heck if I know!! I can’t do it either! I know a great music therapist in the Boston area who would though, he individualizes for every kid (he’s also autistic). He tried to teach me piano and suggested the xylophone instead. Heh. Gross motor stuff is more my speed. I finally mastered SCISSORS, like, last week…I wish I were exaggerating…
I like the Autism Every WAY idea, and I also understand how it is difficult NOT to divide the autism community into camps, I am sure there would be more than one.
My thought would be that all those “camps” would be able to come togther to advocate for expert doctors, therapists, educators, etc….that are trained and educated to handle any child on the spectrum, wherever they may be and in whatever city or state they may be in.
I know from meeting other parents of autistic children in my community that we each have the same basic desire and that is to get our child’s needs met, whether they be educational or therapeutic or medicinal. The specific need may vary but we want people who are knowledgeable enough to provide that for our child.
I don’t think it would do anyone in the autistic community any good to take sides against one “camp” over the other, the children will lose out if that happens. There is advantage in numbers.
I live in a state that is far behind in having resources, support and professionals who can help with autistic children. In the part of my state that I live in it is worse than in other areas and I live in the 3rd largest city in my state. I can drive 3 hours away and find 3 schools that cater to ASD children and a school system that is finally starting to wake up and realize what they need to do for these children.
Some would say “Move” and I have thought of that, but it is just not possible at this point. So here I am, we don’t have any doctors who specialize in autism THAT LIVE HERE, there are only 3 dr’s that I know of who do see kids with autism and diagnose as well and they all travel here from somewhere else to see these kids and the wait to get in to see them could be months to even 2 years!
Most children if they are diagnosed here in this city, it isn’t until they are 5 o5 6, and I am hearing of some not being diagnosed until 15 or 16(usually with Asperger’s disorder). Many of our local dr’s want to take a “wait and see approach” and “just hate to put that kind of label on a child”
There aren’t any therapists who specialize in autism and only one support group that I know of and that is the one I have bi-monthly.
I won’t get started on the school system because we would be here all day. They are like the little monkeys “Hear no evil, See no evil, Speak no evil” and they use the law to their extreme advantage.
I would like to see something get started to get services and resources spread out more evenly throughout the states. There are peopele in other areas who I am sure have it even worse where they live and I think what about those kids? Where will they be 5, 10, 15 years from now?
So, it concerns me, when a large group like Autism Speaks, who has so many people listening, that they may not be saying the right things and doing the right things.
I am all for finding a cure or cures, and a cause or causes, but what do we do in the meantime?
MR. DOHERTY, you mentioned fighting for certain things in your community in the first paragraph of your post….mind sharing some ideas on how you did that? especially the pre-school services and trained autism personnel in the schools? Any advice would be much appreciated.
Thanks
To landsmom- Wow…which state do you live in? I am concerned as well that there are not enough doctors, therapists,teachers or programs for children with AS. I am a mom of a 7 year old with Asperger Syndrome who was diagnosed at age 2. We are fortunate to live in the Boston area where there are more services than mentioned in your post. There still however, are not enough. I too hope that Autism Speaks considers to focus on best pracitices in educating children with Autism Spectrum. There are so many children that will benefit from the knowledge.
autism every way—–it does seem that there is a tendency for people to divide themselves up according to, as landonsmom notes, camps. I guess what I hope is that we can acknowledge difference while seeing similarities and commonalities; to me, use of terms like “hfa” and “lfa” do not encourage this kind of understanding at all. And while there are a lot of differences between my son and a colleague’s teenage Asperger’s son whom I met today—-and between Charlie and a cousin’s child who is the archetypal teenage “computer geek”—-there are deep-running commonalities. I’m not so sure that the “Balkanization” of the autism community would be a good or helpful thing.
I don’t see the need for “camps” either. My offical diagnosis is “Classic Asperger’s” but I use the term autistic when talking with others. Partly because so many give blank stares when you mention Asperger’s but know exactly what autism is (even if you have to later explain to them that it does not mean that you need them to do things for you or talk really slow.)
Honestly the differences are very small, but there is so much that we all have in common (plus Kanner and Asperger were studying the same thing the “Kanner’s autism vs Asperger’s autism” is a relatively new idea.) I cringe every time I find myself unable to avoid using “HFA” or “LFA” in conversation. We all function in our own way, some need more help than others, but we all CAN function. The only obsticle I see is a lack of education and understanding from many non-autistic people.
I agree that we should try to focus on the similarities. If within the autism community we can not support each other it seems hard to expect that those outside of it would be able to have understanding. So much more could be ackomplished if everyone would ban together rather than focusing on hfa or lfa. There is power in numbers.
… Although his behavior was used by his mom as a tool in the court battle to demonize me,…
Wow, that’s a new low for divorce lawyers. Using tantrums of an autistic kid as evidence of bad parenting.
I hope with time that your ex-wife sees the error of having done that. Imagine if your son ever goes down to the courthouse later in life and gets a copy of the transcript. How would he not feel responsible for the breakup?
Michele, I live in Indiana, the southwestern tip, the city is Evansville.
My son has had his dx for almost 2 years (just a few days away from the 2 yr mark) and I had to fight to get that….the school would not diagnose him with autism, they wanted to stick w/ the somewhat “easier” to manage dx of ADHD, at least in their eyes, they see the ADHD dx and think “Medication will help” and it solves their problems. I don’t in any way think ADHD is easy to live with I am just saying that is the way our school system comes across.
I just recently found a speech and OT that are knowledgeable of autism that can work with him, and it has been one year and one month since we have had him in ABA, but get this, our ABA therapist is the ONLY ONE in the city and she moved here from Massachussetts only a little over a year ago….and we may lose her because she doesn’t have a job with an organization that hires BCABA’s…she has to work another job on top of the 3 kids she sees on her own.
The reality of the dx hit the hardest when I went to find help for him and couldn’t find anything…that was the most devastating to me at the time and now it is not only that but all the parents that are coming behind me with children who are younger and they won’t get what they need either…whether it be qualified dr’s, therapists….the few professionals I have found have a looooonnnngggg waiting list to get in to them and they are overworked on top of it.
The schools system has the attitude of “if it ain’t broke, don’t fix it” with their method of teaching, which dates back 30 or more years….I would have no problem with that attitude if what they were doing actuallly worked but unfortunately it doesn’t. When our ABA therapist came she did the ABLLS on my son and then we did it again just a couple of months ago, his skills have skyrocketed since the last one and it is all due to the ABA, the school has never been able to show that kind of progress, mainly because they do not take data correctly…..
Sorry, everyone, I am rambling, but it is hard not to when I get started and it happens to be one of those days when I feel a little despair towards the situation I am in, in regards to my son, and when people are calling me to find out what our city has to offer and I have the sad news of telling them the real truth and then trying to get them to the right place with what little we do have….
While I have begun to hate the HFA/LFA terminology, I can’t help but relate to it. I have a son, almost 12, who was diagnosed with Asperger’s six years ago, I also have a 5-year-old daughter who is diagnosed as “classic autism”. My son had issues beginning in kindergarten, but they were none of the same signs as my daughter (I also have a 15-year-old NT daughter, as well as 2 NT stepdaughters—much older, but just as much mine!) The point, I guess, that I try to make is that, having two children on the spectrum, I could not have two more different children. One is non-verbal (or, as we like to joke, a non-verbal child who never shuts up!), and we have another who is the classic “little professor”….he’s 12 going on 35.
However. And it’s a big however. There are certain issues that the “little professor”, John Paul, suffers through greatly. He truly has no friends. He’s been called “freak” by classmates. And, yet, those classmates are now his closest “friends”. Seemingly, those who call him “freak” on the playground, those who chase him around…they have managed to discover that his acceptance of THEM results in their acceptance of HIM. He holds no judgement against them, and, thus, they have accepted him.
And then the non-verbal one, Ely, has no problem making friends…..though, granted, her friends are all “like her”….she’s in a Preschool Program for Children with Disabilities. The majority of the children in her class are autistic. But, then, think….all autistic children are different. Some are verbal, some are not, some are social, some are not. Some spend the majority of the school-day shrieking (as Ely has been known to do, though not as much anymore), some moaning, some completely silent. But the amazing thing (and something I think we could all learn from) is that these children, all four- and five-year-olds, are so very accepting of each other. Yes, they vary in degrees of “severity”, they all have different quirks…but they all accept each other. They do not differentiate in their acceptance of each other. They are their own little family, and deal with their own little personalities.
I wish I could see that same acceptance amongst their parents. There seems to be some bizarre competition amongst them….who is more “afflicted”? Who is more “competent”?
It is just bizarre to me. Maybe it IS the fact that I have two children who have similar diagnoses, and yet are so different. I can say this, though…what works for one? Not so much the other!!!! While I don’t wish to give any credit to Autism Speaks, maybe the idea of “autisms” bears some weight.
Thanks, Kristina, for a really good and thoughtful post.
AJ
AJ,
Unfortunately I see that “competition” you mention from time to time amongst parents I meet….who is more “afflicted” or more “competent” and I agree with you that for those parents who do that, it is bizarre.
When I meet someone whose child may be more severe than mine, then my heart goes out to them and I also realize how fortunate I am to only have what I have to deal with….I can only imagine what I would do if my son were more severe…when I see the parents w/ the children who are more competent, then I think “hey my son could do that some day” and I ask questions to see what they did with their child that might be different that I might be able to do with my son, I hope to learn from every parent I meet who has a child with autism….I guess it is all in how you look at things.
Kassiane and Ms. Clark, I’m wondering which autism organization is next—ASA?
Probably some of the smaller ones before ASA. ASA is one big chicken to microwave…just by sheer longevity, AND having a couple spectrum adults on the board. AutismWeeps won’t be wanting to deal with THAT, for sure.
Hi Landonsmom,
In the Boston area we are surrounded by top hospitals and schools specifically for children with AS. It is a constant battle for services for our son. My son attends our public school system and we fight every day…prior to having children I was a guidance counselor so I know about school politics. Schools around here cannot diagnose children with anything. I am surprised that your school diagnosed your son with ADD. Medication is very ugly. Prior to being a guidance counselor I worked as a mental health counselor on a locked psychiatric unit for children for children ages 3-16. Medication in my experience seems to breed more medication and more problems…although, some parents and practicioners claim it is needed. We will not use it for my son. We have sought many services for our son to help him navigate the social and educational environment. We began seeking services through our early intervention program at age 2 with the help of our developmental pediatrician. We have found that private pediatricians, nuerologists, occupational therapists and speech therapists are most beneficial in guiding the way. They do not have an agenda so to speak. We have attended every conference and seminar offered in our area…and read every book we could get our hands on. We have networked with Autism groups, Sped Pacs in our own town and surrounding towns…obtained advocates and finally a lawyer…even after having all of these things, what helps our son the most….Small class size (which he doesn’t have…he’s in a class of 20 without an aide – this is why we are still advocating), visuals…which is why we created the choiceworks system…www.beevisual.com, occupational therapy…(trampoline, swimming – have access to this as much as possible) social skills with small group instruction and someone he connects with teaching concrete examples of WHY it is ok or not ok to say and do certain things at certain times. Teaching the unwritten rules of social behavior. When specific expectations are put into place and he understands why and everyone follows through with those expectations across environments…anxiety is diminished and we have a much happier child. We just need to work on the smaller class size. I am so concerned since this field is the least chosen by students entering college today…Parents, legislators and those currently in the field need to get cracken!
Best to you
AJ,
The acceptance is no mystery. Those of us with autism understand each other in the same way that non-autistics understand each other. The body and facial language is familiar and understood. Before I was diagnosed I noticed that I had an easier time communicating with kids I knew that were diagnosed on the spectrum than others around us. It didn’t occur to me why until more recently.
I also have an easier time communicating with my autistic son than my non-autistic ex-wife does.
I live in Vermont and we have early intervention, who will come and asses your child. But unfortunately they are reluctant to give a diagnosis, which puts any treatment on hold. they did come and meet once a week to check on us and give ideas. The BIGGEST problem is that kids are turned over to the school system at 3. Each school has there own pre school program or no program. So when my son got turned over to the school, he was not old enough to go to school, and they do not do home visits, also our 3 year old pre school program this year is 1 afternoon a week and each year it can change depending on numbers of students. so you can not depend on anything. We never know what is happening from year to year and there is nobody in charge of the firson the state hires to work with our child our colect data. therer is a huge loop hole us parents have to jump across.
Apologies for not keeping up with these comments better! Leadfeet Dad—–I have been thinking the “divorce issue” gets brought up as often as it does to show yet another reason about the “burden of autism”……
landonsmom, please keep writing here and letting us know what you think—-rambling is always allowed! I’ve known those days of despair—not at one’s child but at the state of things around one’s child. I think the internet an be a real boon and help one to self-educate.
AJ–you’ve given me food for thought for a future post—-
I wish I could see that same acceptance amongst their parents. There seems to be some bizarre competition amongst them….who is more “afflicted”? Who is more “competent”?
I have been thinking today about how some say that an “hfa” “AS” person cannot represent a child who is “severely autistic”—as you point out, parents are just as much on a “spectrum.”
The notion of “autisms” is also mentioned here—-I think of it as another way to refer to the spectrum.
Your comment was a mini-essay about so many things—am still reflecting on it.
Re divorce issue:
1) I’ve been married awhile, my oldest was 5 weeks old on our 10th wedding anniversary. We’re not divorcing, autism or no, anything more serious or no. We’re just not divorcing, period.
2) We have a friend with an autistic son; we didn’t meet her on account of her having an autistic son, we just met a neat person and then found out about that. She is divorced, but she says her son’s autism didn’t cause the divorce, but it accelerated the process — that marriage was not going to last either way, period. (And before anyone starts beating up the dad, the boy is living with the dad more than the mom right now, and the dad is a good dad.)
Re education for our kids:
I have 3 kids with autism diagnoses and I can’t define levels of “functioning” for anyone.
Each one is affected differently, each one has different strengths and weaknesses.
Where we are, services are OK — not stellar, but we’re in a much better position than some of the other commenters here.
Our oldest had 5 words at 14 months and 0 at 15 months. Big flag for autism there. He got a diagnosis from a pediatric neurologist and we got him private speech and occupational therapy, and got him into the PPCD program in our school district about 6 months after his 3rd birthday.
Our younger kids were in the Early Intervention program for speech delays and then had their cases handed over to the school district before their 3rd birthday. There was an evaluation, someone with credentials in diagnosing developmental disabilities came up with “mild to moderate autism” for both, and they started PPCD on their 3rd birthday and have been doing well in that program.
Nothing here is quite autism-specific, I’ve heard some positive things about another school district in the area that might be better – but the specific people involved know a fair bit about autism and are becoming experts on our particular children, and unless there were a really compelling reason, I wouldn’t move any of them to another program. It may not be the complete ideal for any of them, but it’s good, and they’re all learning, which is the whole point of school, right? (And they’re not separating the twins, which is probably better for one of them in that he doesn’t do as well in school when his sister isn’t there, and he got very upset one day when he lost sight of her for a minute when it was time to go home — he needs her more than any casual observer might think.)
The divorce “statistic”: I noticed Oprah’s show claims that Autism Speaks has “research” on divorce rates. Awhile ago I did some webcrawling to find the source of this statistic and couldn’t find it. I suspect it’s a kind of Internet urban legend. I did email a researcher, Jane Mauldon, about disability and divorce, and she said she thought the number sounded too high and questioned it also. I’m so sorry these idiots swallowed up NAAR. It’s a real loss. I’m not participating in the walks anymore; I’ll give my money to OAR.