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Autism/Parenting plan assessment for child with ASD

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Question
I have a 12 year old son who was diagnosed with ASD last year. He is high functioning. Most people and friends will never catch on there is something different about him unless they keep track of missed social cues or how quickly irritated he can become for reasons unknown to them. In the right environment he thrives and is learning appropriate behavior with regular coaching. When he is carrying around anxiety or is presented with illogical or unexpected conditions, he also quickly falls out of the green zone in either direction but is improving as he also learns to recognize his emotions and coping strategies in place.

His mom and I separated over 2 years ago and she unilaterally changed his school and moved to a different town while also insisting on being the primary care parent; limiting my access and imposing a schedule that suited her custody agenda. I also moved just around the corner from where my son would be attending school. Our son struggled with the mid year school change and he was often out of control in mom's care. His mom returned to a doctor who had diagnosed our son with ADHD 3 years prior and had him prescribed Ritalin and concerta in her efforts to manage his behavior; a behavior which I did not experience when he was in my care. I had presented that we could have our son assessed for ASD but she disagreed and tried to blame me for his outbursts and tantrums. She later agreed to get a referral for an assessment through her family doctor but I recognized that she immediately began to use the Autism card even in public to explain our son's behavior when she couldn't control him and is presently playing the Autism card in court to limit my access. She has tried to convince our son that it isn't good for him to spend too much time with me according to experts.

We are presently in a legal custody dispute with trial commencing in 3 weeks and where there is an Office of the Children's Lawyer report recommending 50/50 shared parenting. Because the report was prepared just 2 months before our son's diagnoses of ASD, his mom insists the report is invalid and has so far been successfully able to play up the diagnosis by simply making the vague statement that shared parenting wouldn't provide the consistency a child with Autism needs and she also presents the generic view of his "difficulty with transitions". 2 Judges to date simply take in this Autism stereotype without considering our son's individual needs and I have no professionals to speak to this.

My relationship with my son is healthy and I support him in every way I can. I provide a social environment at my home that he appreciates and have helped him to make and keep some strong connections with both friends from school and in the neighborhood. I am extremely consistent with him and he is well behaved in my care. He was having behavior issues at school which have improved dramatically with additional support he receives including lunch time visits at home; an initiative that began from his requests to spend time with me for his school lunch break but was opposed by his mom who later became involved when it was recommended by the school as having had positive effects on our son. With a new custody order she is preparing to eliminate the lunch visits as she is asking to have final say with her presentation to the courts that we can not agree on certain matters. The court seems to enjoy taking mom's position even though it isn't considering the real effect on our son. I'm worried about the next few years as my son already recognizes what is happening is not in his favor.


From what I have seen, read, experienced, and been told by other professionals, I understand that my son would benefit from a consistent parenting schedule that flexes to his needs from a balanced baseline - 50/50 access. The matter of consistency with my son is more about predictable environment and people; not about having a same environment or more time in one household (especially if it is not his preference). I believe that our son's development also relies on some change and variability as he learns to be more independent and I make it my business to support him in these goals; he is mature enough and smart enough to recognize this. I am concerned that decisions being made are contrary to his individual needs and this might continue if the court continues to accepts the Autism stereotype being presented about him.

Question: In the event that I can obtain an order to assess my son's needs with respect to his ASD and parental access, I am unaware of any specific organizations or professionals who deal specifically with such matters. Do you have any suggestions on how I can address my concerns or how to get help with assessing what is best for my son's individual needs in terms of parental access that is presentable to a deciding court? (I am in the Durham Region of Ontario)

Answer
Hello Leo,

First, your son is very lucky to have two parents who love him and want to be involved in his life.

I can offer you some opinions on autism and kids in general, but I don't know your son. Please do not construe what I say as offering legal advice.

Practices vary by province but at age 12, will the judge ask your son his opinion about living arrangements? Your son's preferences may be taken into account.

It's encouraging that the school finds the lunch hour visits positive. That would be useful information for the judge to have. A diagnosis of ADHD is often given after similar behaviours are observed across environments, not just in one building. Diagnosing physicians often appreciate hearing the views of both parents as well as that of the teacher. Sometimes adults view a child differently because of the way they structure that environment, the routines in place and expectations. Some people also have a higher or lower tolerance for certain behaviours. It would be helpful to know if the teacher notices improvements in amount of on-task behaviour, work completion, self-regulation and possibly even social interactions when your son is taking medications. And, most importantly, can your son identify positive changes when he takes the prescriptions? There are checklists and ratings scales that can help with this.

I strongly agree with a few of your statements:

- " The matter of consistency with my son is more about predictable environment and people; not about having a same environment or more time in one household..."

- " I believe that our son's development also relies on some change and variability as he learns to be more independent and I make it my business to support him in these goals..."

- " ...my son would benefit from a consistent parenting schedule that flexes to his needs...."

Kids who have autism function best within a predictable environment and a schedule they can count on. While it might be ideal for that environment to remain constant in one home with two caring parents, life does not always turn out that way. Change happens.

Change is tough for kids on the spectrum. But tough does not mean impossible. In fact, there can be a danger if making everything perfectly consistent and predictable because life does not work that way. There are always unexpected things throw in. Kids on the spectrum need to be taught how to be flexible, while still operating within a safe, structured routine.

Children with autism spectrum disorders have a difficult time making sense of their worlds; that is why establishing routines and patterns are so important to their comfort levels. There can be a danger in those though. I have seen families and schools who establish such a rigid routine (thinking they are doing the helpful thing) that no change is allowed to interrupt the pattern. But life happens and when it does the unexpected change can be traumatic for these children. So, although it's key to establish predictable routines, change must be built into the equation.

Kids can be taught how to handle change. Actually, this is an important skill to teach as you do not want your son stuck in rigidity, unable to handle the ebb and flow of life.

Since most people with autism spectrum disorders taken in information that they see more readily than what they hear, visual depictions of what to expect are often used with great success. A visual schedule using pictures (or words) can give great comfort to a child, allowing them to see at a glance how their day will look and what might be expected of them. Good examples, plus free pictures and schedule grids are available at http://www.do2learn.com.

As much as you try to, it's quite difficult to create exactly the same rules and routines in two different households. That's all right. The important thing is that the kids know what to expect and what is expected of them in each home and that basic rules of conduct, bedtimes, etc. are similar.

A calendar on the fridge in both homes showing which days the kids will be at each place will help. A social story explaining the new schedule would also be a useful tool to let your son know about this alteration to the regular pattern. In case you are not familiar with using social stories, this link may help: http://www.autism-help.org/communication-social-stories-autism.htm. Your little boy may need reassurance that even though he may spend a particular night in a different house, that the rest of his life will carry on as usual, and he'll attend his activities, etc. just the same.

Put on the fridge a schedule of when he will see you. For the day of your visit, have a visual outline of what you plan to do. This could be done in pictures (line drawings or photos) or in words, if Cody reads well. For instance, part of your schedule could say:

9:00 - dad arrives
9:05 - show dad new toys
9:30 - get dressed to go to the park with dad and mom
10:00 - mom leaves to go shopping
11:00 - dad and I go for pizza

Another way to help explain things to your son is through social stories. A social story lets him know what's going to happen, what's expected of him, etc. You could start a binder of social stories to go over with your son. And, start a scrapbook of the fun things you do together - the three of you and just the two of you.

Here's some information on social stories:

http://www.polyxo.com/socialstories/

http://www.autisminspiration.com/public/306.cfm

http://autism.healingthresholds.com/therapy/social-stories#rowe

http://www.autisminspiration.com/public/department47.cfm

You son is lucky to have two parents who obviously love him and want to spend time with him.

You likely can't find much information on autism and shared custody because although your son has an ASD, he's an individual. It's not possible to make a blanket statement that all kids with autism spectrum disorders will benefit or not benefit from overnight visits or joint custody situations. Each child and his individual needs must be considered. You may have heard the saying, "If you've met one child with autism, you've met one child with autism." Your son's case needs to be assessed based on his needs alone, not solely on his diagnosis.

Where you live in the Durham region, there are a number of psychologists or clinical social workers who have experience working with ASD kids and their families. You will find some names and contact information at this site:  http://www.durham-autism.org/autism-services/. Here is information on a local parent support group: http://www.autismontario.com/client/aso/ao.nsf/Durham/Support+Groups.

To help your young man adjust, you might try some of these ideas:

- keep other areas of your life as routine and predictable as possible

- use a visual schedule to show your son when he'll be with you and when he'll be with his mom

- each morning, go over the daily schedule to let him know what will be happening

- is there a favorite toy, game or comfort object that he can keep with him no matter which home he's in?

- whether he's in your house or that of his mom, try to keep to the same schedule and routines - supper around the same time, the same bedtime routines, etc.

- when he leaves you for his visit with your wife, don't let your anxieties show. This is all about the child. Show him that visits with his mom are a good thing and not a source of conflict between the adults.

- ensure that even when his living arrangements vary (on schedule), his schooling situation remains the same.

But I'm speaking in generalities since I don't know this child. To make a determination about what's best for your son, I'd suggest you have a psychologist who understands autism make an assessment. Sometimes a neutral third party, without the same emotional investments at stake as the parents, can look at what's in the best interests of the child.

Going between two parents is hard on any child, but more so when that child has autism. It is possible to make it work though through a lot of hard work, patience and planning on the parts of the parents. You both have key roles to play in guiding your son on his path to adulthood and independence.

All the best to you and your family,

Autism

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Dr. Sharon A. Mitchell

Expertise

Sharon can help with parenting and educational concerns. She has worked in teaching, special education, counseling and consulting for over thirty years and gives workshops to educators and parents on working with kids with autism spectrum disorders. Sharon speaks from both the education and parent points of view, having an adult son with Asperger's.

Experience

Sharon has spent decades as a special education consultant with a school district and autism consult for the province's Department of Education, giving workshops and individual consults. Currently she works as regional autism consultant for a health district in between teaching university classes. She is an Amazon bestselling author or a series of novels, each depicting a child who has an autism spectrum disorder. Sharon's Master's thesis looked at the long-term outlook for persons with high functioning autism and Asperger's. Her Doctorate focused on strategies to help those with autism spectrum disorders.

Organizations
Website at http://www.drsharonmitchell.org and sits on Autism Today's Panel of Experts (www.autismtoday.com)

Publications
Author of "Autism Goes to School" - a novel about autism that that became an Amazon bestseller. Get this Amazon bestseller free at http://www.drsharonmitchell.org. In the next book, Autism Runs Away, Ethan is only in grade one and already has been kicked out of one school due to his tantrums and pattern of running away when in a panic. Now in a new school his mom remains glued to her phone, waiting for the call to tell her that they don’t know what to do with a child who has autism. Sara is about to learn if this new school is up to the challenge. (https://www.amazon.ca/Autism-Runs-Away-Book-School-ebook/dp/B01FCYQ7DC). Autism Belongs is the 3rd book. Manny's life has shrank to the confines of their house. His parents are desperate not to rock his world because the aggression has gotten to much worse. Where will this lead? Is there a chance that Manny could actually belong out in the world? You bet! Get a free sample at https://www.amazon.com/Autism-Belongs-School-Daze-Book-ebook/dp/B0184ZQMI6. Book four, Autism Talks and Talks, is about a 12 year old girl who has Asperger's. She's bright, inquisitive, highly verbal, but lacks social skills. Try a free sample at https://www.amazon.ca/Autism-Talks-Book-School-Daze-ebook/dp/B01IIUZH3S Book five, Autism Grows Up features Suzie, a bright, twenty-one year old whose life collapsed after she finished high school. Now, she lives in her mother's basement, spending nights on her computer, afraid to broach the world outside their door. Autism Grows Up is found at https://www.amazon.com/Autism-Grows-School-Daze-Book-ebook/dp/B01JB8QW3U. Prefer a boxed set? Get the first 3 books bundled together at https://www.amazon.com/Autism-Box-Set-School-Books-ebook/dp/B01KBEHJ08. Co-author of Amazon.com bestseller, The Official Autism 101 Manual (http://autism101manual.com/).

Education/Credentials
B.A. in Psychology, B.Ed. in Special Education, M.A. in Educational Leadership PhD. in Psychology Management, specializing in autism.

Awards and Honors
B.R.A.G. Medallion for the novel Autism Goes to School - Book 1 in the School Daze Series. (http://www.bragmedallion.com/medallion-honorees/2013/school-daze-autism-goes-to-school). Like Autism Goes to School, the third book in the series, Autism Belongs, also ranked #1 on Amazon (http://www.amazon.com/Autism-Belongs-School-Daze-Book-ebook/dp/B0184ZQMI6). Manny is not like other children. He doesn’t talk. He doesn’t leave the house. His parents desperately try to arrange their world so that Manny does not get upset. Because, when he does, well, the aggression was getting worse. At ten, Manny was becoming difficult to handle.

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