Insider Knowledges #3 & #4

Insiders are those personally impacted by autism spectrum disorders, either because they have a child or family member diagnosed or because they have a diagnosis. Insiders have a great deal of knowledge based on their own experience that can be helpful to others.

Insider Knowledge TidBits are small pieces of information directly from Insiders that can serve as a way to circulate information. We hope that this insider-knowledge is helpful to both those impacted directly and working with those impacted in finding ways to reduce the stressors associated with a diagnosis of autism.

Parent knowledges: A collective document of insider-knowledges of parenting a child with autism

A collective document is one that can always be added to and will carry on the stories and knowledges that parents have. It is a way to learn from others’ knowledge and a way for members of our community to share their own stories and knowleges along the way.

This months TidBits have to do with connecting with other parents so I am including them both together.

#3 Talk with a lot of parents about autism. Seek other parents out: Talking with other parents of children with autism helps many to feel less alone. Other parents can provide information, resources and insight as a guide, especially when a new diagnosis is received. Often parents tell me that one of the things that helped them get through hard times was seeking other parents out.

One mother told me that after speaking with many doctors and nurses for years and finally receiving a diagnosis she felt confused and unsure of the medical profession. She searched for other parents to help her hold onto hope. She still remembers one mother’s supportive words of encouragement. She says that was a turning point for her and she will never forget this mother.

#4 Make friendships with women that have autistic children that are older. Their stories are an avenue to hope: Many mothers have found enduring friendships with other mothers that are experiencing raising a child with autism. These friendships are more than just guidance or advice. Many mothers speak of the comfort and a sense of hope in sharing experience with other mothers. Sometimes, building friendships with mothers whose children are older provides insight into experience over years. This often lends to the sense that they will get through the tough times, that ‘their children grew and overcame challenges and so will my child’, and that ‘others have done it before so I can do it too!’

One mother specifically spoke of friendships she valued that were with mothers of older children with autism then her own. She told me she found this hope in the least likely place – waiting for her son in the waiting room. At first she felt like she would be better off if she left to run errands during the hour and a half but one day she saw an older boy come in with his mother. The boy went with his therapist and the mother sat down beside her. The two of them spoke for the rest of the time. She said she learned more from that mother than she had from several doctors. She listened to the mother’s stories about her now-grown son and began to see glimmers of hope she had not seen before. She treasured that hour and now never left while waiting for her son because she did not want to miss the opportunity to meet other parents. She was able to spend more time with the first mother when she was also in the waiting room as well. Their friendship grew and she held on to the hope she gained through their conversations.

#1  Hold onto hope: click here

#2 Be creative. Find people that will support creativity in helping our children: click here

Olinger, C (2010) Privileging insider-knowledges in the world of autism. The International Journal of Narrative Therapy and Community Work, 2, p. 37-50.

Read Previous TidBits:

Why can’t I just be the way I am?

The Importance of Ruling out Seizures

The power of a transitional warning

When your child is starting a new school or class

Transition Planning: Helping our adolescents plan for post high school

 

General IEP Tips

Recently I have become more concerned about parent/guardian(s) understanding of Individualized Education Plans and knowledge of ways to navigate the very difficult process. I believe that the IEP is important to set your child up for success and to address his/her areas of need so that he/she can get the support that is needed to be successful in so many areas… and it is not just limited to academics! I will not try to address all the areas of an IEP as that can get quite overwhelming but we would love to hear your number one tip if you would like to share it. I have compiled a few of my quick tips to help parent/guardian(s) through the very difficult and time consuming process. Here is what I have come to find helpful after attending many IEPs. I share these ideas in hopes that tips from others can minimize stress.

General IEP Tips

  • MOST IMPORTANT: Do not sign that you are in agreement with the IEP at the actual meeting.
    • You are not required to sign agreement on the IEP until you actually agree to all terms and there is no law that requires that you sign in that meeting.
    • You will be asked to sign that you attended but DO NOT sign agreement at the initial meeting… even if you think you agree.
    • 9 times out of 10 there is something that you think of that is missing or wording that is just a little off. Take it home, sleep on it, ask a friend to review it, then if you still feel good about it sign it.
    • Once you sign it that you can ask for an addendum or a new IEP to change anything at any time- in this case you must request an IEP meeting in writing and the school may have up to 60 school days (depending on the purpose of the meeting) to comply with your request so it may take a while.
  • Don’t rush! If you feel pressured to get through an IEP, reconvene.
    • I generally think that a good IEP will take at least 2 hours. I have been in IEPs that have lasted up to 6 hours 3 times over for just one IEP! I am not suggesting you need to take that long but in order to get true progress, reflect actual present levels, ensure carefully worded, measurable goals, and determine appropriate services with a team of people, all the while asking questions and clarifying this will naturally take time. (Components that should be present in a meeting)
    • The least amount of time I have been in a good IEP is 1.5 hours and that was because the teachers, parents and team emailed out progress and proposed goals a few weeks in advance and engaged in an on-going email conversation and revision process ahead of time. The bulk of the work was done without having to sit for hours in a meeting and then the meeting was spent clarifying questions and tweaking minor details. That still took 1.5 hours!!!!
    • Your child’s success should not be short changed by other people’s schedules (see who should attend below to find out how to make concessions for people that may need to step out)
  • The notes section is very important!
    • Ask that notes be included on any of the requests, concerns, or questions that you have brought up. Especially if you are noticing a difference between school and home you should ask that they note it. This is important to know what your child is capable of and what to expect from him/her.
    • Have them write in the notes section any recommendations, discussions, or other mentions (made in addition to goals) that the IEP team has made. This way you have it in writing to refer to… It never fails that something is mentioned in a meeting by someone that changes jobs or is no longer at your child’s school and no one else knows because it was not in the notes. Having concise notes will protect you and your child’s right and hold people accountable. If it is not in writing they are not accountable.
  • ASK, ASK, ASK!
    • Best bet is to think “If I don’t ask, I won’t get it”. The school must at least consider a request that you have and the team will evaluate your request to determine if it is appropriate. However, most of the time, if you don’t ask the issue will be overlooked.
    • Don’t be afraid to ask questions. It is important that you understand what the IEP means, what goals are targeting, who is responsible for overseeing them, why the goal is in place, what typical kids in that grade are doing, etc, etc, etc. Teachers and providers tend to use a lot of acronyms and terms, so not be afraid to clarify what they mean!
    • If they say no and you still feel it is appropriate or in the best interest of your child keep asking, seek advice from other parents, and look into getting an education consultant or special education advocate.
  • Present levels need to accurately state your child’s strengths and interests and your child’s weaknesses in detail. Our kids have many areas that they thrive in and others they struggle in. We need to accurately represent this so that we do not spend time focusing on the wrong things. An IEP is in place because there are things getting in the way of your child developing skills at the same rate as most other children. The IEP is designed to meet your child where he/she is at and move them forward with more support and focus on those areas so that they can get closer to the skills of most other children their age. If weaknesses are left out then they may overlook an area of need that your child has. Strengths and interests are just as important so they know how to balance success and hard work.
  • Who should be at an IEP meeting?
    • The public agency (school) is responsible for ensuring that the following people attend the IEP meeting:
      • Parents or legal guardian of the child (“Parents”): at least one parent/legal guardian, and in the case of parents with split custody, both parents should attend
      • Regular Education Teacher: Not less than one regular education teacher of the child should attend to serve as a link to your child’s growth toward meeting standards of general education curriculum and opportunities, such as socialization, vocational skills, etc.
      • Special Education Teacher: The child’s special education teacher; no less than one special education provider.

If the child has more than one teacher, all are required to attend

  • Special Education Coordinator or Representative of Special Education Department or District that has specific knowledge and qualifications to offer services
  • An individual who can interpret the instructional implications of evaluation results, such as a school psychologist, and who may also be one of the other listed members
  • Non-English interpreter must be provided by the school district to translate for the parents if the parents request a translator. This cannot be the child’s teacher or another integral member of the IEP team so that the translation is non-bias. It is highly recommended that if  English is not your first language that an interpreter be requested
  • Invite others! *At the discretion of the parent or the agency, other individuals who have knowledge or special expertise regarding the child, including related services personnel as appropriate: May include Occupational Therapist, Speech and Language Pathologist, Adaptive Physical Education Teacher, School Counselor, Mental Health Interventionist, School Nurse, etc.*
  • Whenever appropriate, the child with a disability**: Your child, if capable, should have a say in the supports and goals that are going to help him/her succeed, especially as they get older and can better understand the implications of the services. They can also give input into what is helpful or not for him/her and (s)he can “buy into” his/her own education by having a say in what is important to him/her.

*Parents have the right to invite other parties, including outside service providers, tutors, education consultants/advocates, acquaintances that can support the IEP process, etc. to attend the IEP meeting

**In accordance with 34 CFR 300.321(a)(7), the public agency must invite a child with a disability to attend the child’s IEP Team meeting if a purpose of the meeting will be the consideration of the postsecondary goals for the child and the transition services needed to assist the child in reaching those goals under 34 CFR 300.320(b).

  • Instances when an IEP Team member may not need to attend:
    • A member of the IEP Team is not required to attend an IEP Team meeting, in whole or in part, if the parent/legal guardian of a child with a disability and the public agency agree, in writing, that the attendance of the member is not necessary because the member’s area of the curriculum or related services is not being modified or discussed in the meeting.
    • A member of the IEP Team may be excused from attending an IEP Team meeting, in whole or in part, when the meeting involves a modification to or discussion of the member’s area of the curriculum or related services, if:
      • The parent, in writing, and the public agency consent to the excusal; and
      • The member submits, in writing to the parent and the IEP Team, input into the development of the IEP prior to the meeting.

There are so many more factors to consider for an IEP so I highly recommend asking as many parents as you can to get their advice. If you are finding it hard to advocate for your child or feeling as through the team is not working toward the best interest of your child, hire an advocate or educational consultant. If you cannot afford this extra support seek the support of other parents and professionals that can give you no or low cost advice. In San Diego you can seek support on ValeriesList (valeriesList.com) or look into attending an IEP workshop at TASK or Compass.

Additional tips http://www.mhas-la.org/Special%20Education%20Docs/Docs%20for%20website/IEP%20Meeting%20Tips%20REV%202-1-08.pdf

 

Read Previous TidBits:

Insider Knowledges- Words of wisdom by parents of children diagnosed with ASD. (#1) (#2)

Why can’t I just be the way I am?

The Importance of Ruling out Seizures

The power of a transitional warning

When your child is starting a new school or class

Transition Planning: Helping our adolescents plan for post high school

 

[This information is intended to inform others of some of the ways of working I have found to be helpful. If you wish to use any portion of this information please gain permission from Courtney Olinger, PsyD at colinger@respectrum.org and use appropriate citations and references]

© 2011

Transition Planning: Helping our adolescents plan for post high school

On Memorial Day weekend, my brother David would have graduated from high school. Unfortunately he never even saw the first day of his senior year because he chose to end his life.  When I think about how his graduation would have been I am saddened that I will never get to see him make that milestone. Yet, I wonder how prepared he would have been to leave high school and that saddens me as well. We had been trying to implement a Transition Plan into his IEP which was being finalized when he took his life and I cannot help but think about how much he need that Transition Plan sooner.

A story you may identify with

I was shocked when my brother told me in January of his Junior year that his school had told him he could graduate early (in December of his Senior year). That can’t be right. How could that be? He had failed several classes and all I heard for the last several years was how much he struggled in school. How could it be that a school would graduate him early? He was fine with it since all he wanted was to “get out of school”… and why shouldn’t he, when the learning, the support, and the expectation of him being able to succeed had long since ceased.  It seemed that the biggest thing he had learned was that school wasn’t for him and he was vocal about it all the time. With a GPA just over 2.0, he would graduate early, accomplishing what David and the system both wanted- to get him out.

At many times throughout David’s life he had stated that he did not need college or schooling after high school because he was smart enough to make a living. He had no idea what he wanted to do but assumed his brains were enough. Yes, the kid was brilliant even though he struggled tremendously from preschool through high school… Without going into great detail about those struggles, it is evident that the education system significantly overlooked his struggles because 1) his high verbal ability, 2) his apparent intelligence (despite the disparity with his school performance), and 3) as he got older the outward behaviors, the tantrums, the fits, the frustration seemed to dissipate (unfortunately translating to inward symptoms of anxiety, depression, helplessness, despair, and shame). When these 3 aspects are combined and a kid is not performing up to their apparent intelligence the usual conclusion is made, “he’s just lazy”. And let’s face it, teachers, and often parents, get frustrated with Lazy, leading into a cycle of frustration where the adult determines “I’m not going to make an effort if he won’t” and the adolescent accepts “no one will help me anyway, I give up” (or the very popular “I don’t care”). As a result of David’s struggles being overlooked and pushed aside, David’s rate of learning, social and emotional growth, and development was stifled. The cycle of Frustration led to the hopes that David would simply get out of school… But then, what?

David had no idea what he wanted to do with his life, and more importantly suffered from a lack of understanding about what it takes to make a living and how that is connected to money, a career, and yes, often the need for a higher education (especially in today’s job market). He had talked about flight school, an idea planted by his mother and one he was certain he could do with little schooling. In November of his Junior year he had said it would take him 2 years to be a pilot.  (Anyone know what it actually takes to make a living off of being a pilot? I don’t really but I am guessing he wouldn’t be a top paid pilot after 2 years of flight school like he thought). By June, flight school seemed to become a fleeting and forgotten interest, superseded by his infatuation with his girlfriend and likely the reality that flight school required math (a subject of which he had little success).  He stopped talking about flight school and was convinced he’d move out and live with his girlfriend (who still had 2 years in high school), but the reality of what it takes to support this was daunting. The signs of how unprepared (both socially and self-sufficiently) he was just kept adding up. David had little understanding of money- tracking it, saving it, or earning it. Around that time, my father had realized that David had emptied his checking account and spent it mainly on taking his girlfriend shopping or out to eat. In the summer, he started his first job, a manual labor position (although he was clumsy and hated exerting energy) because it was the only job he could get. And when he got his first paycheck he went into a tailspin of anxiety upon the realization of how much was deducted for taxes, a reality that significantly added to his anxiety and helplessness that were growing so strong in the last months of his life. David was connecting the dots and surely recognizing that money was not going to just come his way without a good job and a good job was not falling into his lap without an education. He had little understanding of what it took to get, sustain, and manage a career or livelihood and was faced with the sad truth that he was not prepared.

I can imagine what you are thinking, “yea, but no kid in high school really is prepared” and I agree. I know I wasn’t and I am sad at how little our education system does to teach us the reality of living… But what stands out to me for David and for the many children I work with, is how they quickly learn to not try, to not seek help, and to “not care” when they don’t feel like anyone will help them when things are tough.  Instead of supporting David, the school labeled him lazy; instead of helping him prepare they tried to get him out early. The school is not only responsible for helping our children develop tools for life, but also for identifying (See Child Find ) children that need extra support to develop these tools.

I know a child or adolescent that comes to mind when I hear David’s story, what can be done?

The individualized education plan (IEP) (more info on IEP ) is- in it’s ideal form- designed to give our kids, through the age of 22 if necessary, the support and assistance they need to succeed in life (not just academics!). It is designed to give the kids the same opportunity that other children are afforded. Even more importantly it imbeds an understanding that these children may need extra support to come up with a post-high school plan, known as The Transition Plan.

What is the Transition Plan?

Here is some clear, concise information I found on Transitioning Planning click here

I recommend starting transition planning some time between age 14 and 16 (and this is something that you can and often must request). The most important thing to remember is that the Transition Plan is there to help the teenager prepare for what will happen post high school and this encompasses many possibilities from career planning, to social skills, to community interactions, to counseling. It is not designed to give parents or educators a way to impose their ideas on the adolescent, but rather to assist the adolescent in developing some skills that will benefit their continued growth post high school. Often this means that the adolescent will (and should) take part and have a say in the transition plan and what fits for him/her.

Transition Plan Goal Examples

Here is one of the goals I had proposed for David’s Transition Plan to address his areas of need.  Following the goal I had listed the exact steps for completion. I have also included the additional areas of need that I had recommended for transition planning. All kids will have different needs but I list these as an example of what can be done and the areas that often should be targeted in Transition Planning.

  1. Target:  Transition Planning- Career Planning

Goal: By April 2011, David will have researched and compiled 3 possible careers of interest and discover what it takes to enter the career (schooling, hours of practice, license/credential/etc., %of hiring potential- especially when starting), what the career entails (what do they do, responsibilities or possible jobs within a career, projected salary-especially when starting), & what the requirements are to maintain the career (CEUs, etc.), as noted by staff notes.

Benchmark1: By June 2010, David will have researched 1 possible career of interest and discover what it takes to enter the career (schooling, hours of practice, license/credential/etc., %of hiring potential- especially when starting), what the career entails (what do they do, responsibilities or possible jobs within a career, projected salary-especially when starting), & what the requirements are to maintain the career (CEUs, etc.).

Benchmark2: By December 2010, David will have researched 2 possible careers of interest and discover what it takes to enter the career (schooling, hours of practice, license/credential/etc., %of hiring potential- especially when starting), what the career entails (what do they do, responsibilities or possible jobs within a career, projected salary-especially when starting), & what the requirements are to maintain the career (CEUs, etc.).

Does not require writing.  I had made this note because David had an accommodation that allowed him to use an audio recording device and voice output software or to verbally explain answers to a transcriber (a student or teacher who would write for him).

I had even described exactly how I would do it.

Per Career:

Step 1: Discuss possible areas of interest with resource and get suggestions from resource. David picks 3 careers of choice and determines what order he will look them up. David will get help figuring out (and planning what order he will find the parts of the information for each career at a time) how to search for this information (online, magazine, books, etc)

Step 2: David and resource determine what is an appropriate amount of time to spend reading the material found and how he will keep track of what he learns (voice record in digital audio recorder & feed through software, bullet points on computer, dictate to other writer, or report back to resource each day/week so resource can track what he learns).

Step 3: David independently does the search in specified periods of time (time limit to ensure success- need baseline to see what his limit is for attending to this task) targeting specified area (as previously determined) and brings materials he has found to resource where they discuss and plan next steps.

  1. Additional transition planning goals to target David’s needs
    1. Life-skills: Learning organization via his computer (like organizing and maintaining  a calendar with homework, tasks, social events, and important dates; syncing to phone)
    2. Life-Skills: Planning out what you need to complete a task/independent living skills (i.e. planning out the steps to find a job; planning out the steps to wash clothing; planning out a trip to wal-mart including list, money, etc when needing to buy toiletries)
    3. Problem solving/self advocacy (i.e. what to do if his phone dies with all of his homework info; what to do when an accommodation is not provided; what to do when a friend puts him in a tricky situation)

In Summary

Transition Planning is necessary for children that are struggling with post high school preparations and needs to be attended to with ample time. In order to have a successful Transition Plan there needs to be a person that is overseeing the implementation and progress of the goals. Even more importantly, the transition goals need to keep the adolescent’s interests, abilities, and needs into account. They should start with a high level of support and always target the most independence possible. The adolescent needs to commit to his/her part to make a Transition Plan successful.  Keep in mind that typically an IEP is established before a Transition Plan is in place. The adolescent will have to qualify for the IEP with an eligible diagnosis. If your adolescent is in need, do not accept that he/she is “not eligible” and seek help from attorneys, other parents, or outside professionals that can advise you on how to advocate for your child.

 

Read Previous TidBits:

Insider Knowledges- Words of wisdom by parents of children diagnosed with ASD. (#1) (#2)

Why can’t I just be the way I am?

The Importance of Ruling out Seizures

The power of a transitional warning

When your child is starting a new school or class

 

[This information is intended to inform others of some of the ways of working I have found to be helpful. If you wish to use any portion of this information please gain permission from Courtney Olinger, PsyD at colinger@respectrum.org and use appropriate citations and references]

© 2011

TidBit- Insider Knowledge #2

Insiders are those personally impacted by autism spectrum disorders, either because they have a child or family member diagnosed or because they have a diagnosis. Insiders have a great deal of knowledge based on their own experience that can be helpful to others.

Insider Knowledge TidBits are small pieces of information directly from Insiders that can serve as a way to circulate information. We hope that this insider-knowledge is helpful to both those impacted directly and working with those impacted in finding ways to reduce the stressors associated with a diagnosis of autism.

#2 Be creative. Find people that will support creativity in helping our children: Some of us have found ways to be creative with our children. We have found comfort and collaboration with others who have supported such creativity. Our children are constantly changing. They need to be motivated and challenged. This often requires a great deal of creativity on the part of those that work with our children and our children. This fosters enjoyment and engagement.

One mother told me her son had ‘burned out’ on the typical methods of working with him. Things that worked before were suddenly not working and things he had liked were now bringing struggles into their lives. He was upset a lot and it was concerning the mother. She spoke of how she found that constantly changing the environment really helped. She learned to use her creativity to engage him in new ways. The struggles stop and she found that there seemed to be more enjoyment in the things her son was now doing.

Olinger, C (2010) Privileging insider-knowledges in the world of autism. The International Journal of Narrative Therapy and Community Work, 2, p. 37-50.

TidBit’s resume… Why can’t I just be the way I am?

I took  a  break from TidBits after the passing of my brother, but recently I have been re-gaining some clarity and motivation to continue speaking up. I do not claim to have all the answers or to know what your experience is. These TidBits are not intended to be “musts” or “shoulds” but a gathering of the experiences that I have acquired as both a professional and a family member.  If you would like to submit a TidBit or request a topic please contact me at colinger@respectrum.org

I received this question through our website and I asked if I would share it since it seems I am hearing a similar story coming from several of my clients.

“This message is for Courtney. My family counselor suggested I email you. My 11 yr old with asperger’s recently has had behaviors where he expresses his freedom is being violated and there is a lot of injustice in the world. Why he can’t be the way he is. Why does he have to follow everyone else’s rules. He is not violent, but I am worried about his state of mind. He is in 6th grade in all general education environment. He has been shutting down and sitting in the office a lot lately though trying to escape what teachers want him to do. My therapist suggested him righting down his feelings when he is upset to get the emotions out and then go back to class. It is hard to get him to do this “in the moment” however, because he is too frustrated. Any thoughts??”

What follows is how I responded with some additional reflections in italics that i have considered over time.

I have often heard similar struggles to your sons. It may very well be that his freedom is being violated and there is injustice that he is having to deal with. I find that a lot of children I work with exhibit behaviors in response to a situation where they feel they cannot speak up or that even if they do that no one will listen. These types of behaviors can also be related to the thought processing skills of the child and the ability to critically consider the ways that what we want for ourselves and what society wants for us are sometimes different but can also be managed. Writing down feelings may help to express himself but often tends to be too hard in the moment and may keep him too stuck in the feeling. Distraction at that moment may be the easiest thing to deescalate him. I find with a lot of the children I work with talking about the feelings is best done before there are behaviors (as a sort of practice and prevention) and then well after the child has de-escalated.

Unfortunately, with general education, it may be that they are not informed enough of the thought processing to consider different ways to work with your son and what they are doing may be contributing to the behavior. They also may be missing other cognitive
intricacies that are contributing to anxiety and inviting behaviors. Again, this is hard to say not knowing your son or the school environment.

Here are some general strategies I use:
1. There is a 5 point scale that I use with kids where 4 & 5 are extremely mad and frustrated and 1 is happy and calm. I create the scale with each child so that he/she determines what words they want to assign to each number and what colors they may identify each with. We try to keep the description of their feelings in their terms and what fits for them. I also teach them strategies to de-escalate and I let them choose which ones fit best for them to get from a 5 to a 1 (including breathing, time away, drawing, journaling, etc. whatever works for that child and is feasible in the environment. Some of my kids have elected to add other numbers like 0 or 6
2. Determining the triggers and common times these situations happen and practicing (outside of class) different ways to deal with them.
3. Identifying any possible learning “disorders” that may be contributing to frustrations. Often with Aspergers there are learning differences that are over looked because the children are so bright. Teachers assume they learn the same and “should” be able to do all the work on their own because they “are so smart”. These children get labeled as “defiant”, “rude”, “lazy” because they stop doing work, stop turning work in, and say they can’t do it (when we think they are smart enough that they should be able to). These are usually indications that there is a learning difference and for some reason the way we want them to do it is too hard. An example of a common one I see missed is Expressive Writing Disorder, which is a disconnect between what the child thinks and “sees” in their head and what they are able to put down on paper. It is an output issue (rather than fine motor issue). There are a few other learning differences that are not often accounted for or understood by general education. Does your son have an IEP? Has he ever been
evaluated for learning “disorders”. It may be worth looking into. I put “disorder” in quotes because I believe that is a completely wrong title. In fact these children learn just fine, they just may have more difficulties with the way that traditional teaching is done.

**Based on what you wrote is that often children with Aspergers are very black and white in their thinking. It is usually incredibly hard for them to think of the future and often difficult to think of other’s perspectives. In regards to the questions of “why can’t I just be the way I am?” or “why do I need to do things the way others want?” it might be helpful to track situations when he is allowed to be him and when he does what others want. If you can track them in a way that you can highlight future outcome and how others are effected he will start to learn that yes, he has several options and there are certain things that may be better options. This is a good way to teach problem solving skills too.

We exchanged a few other emails in which the mother referenced hearing my brother’s story, having tested for learning “disorders”, and having the fortune of having a school and a therapist that were open to trying new things and already utilizing a scale for emotions. She asked me for an example of ways to track possible choices and future outcomes.

I have attached a chart that gives a very simplistic example of how you can track the possible choices. You can do this with things that have already happened and then guess about what could have been different. I like to do this with both things that worked out favorably and things that did not work out favorably. It takes practice and especially in the beginning will need to be modeled. I often have to give choices of what could go in the Guess boxes (because it is so abstract). I also like to highlight at least 3 scenarios- again so it is not so black and white.

I added Example 2 for this blog as I do not mean to invite others to believe that we need to convince these children that their way of doing things is always not helpful. This would be contrary to my belief that there are many times that their ways are beneficial and deserve respect. Notice that when you evaluate a situation (example 1 and example 2) there are times that being “the way I am” are more favorable than other times. Everyone should have the right to “be who they are”; yet, each person would benefit from evaluating the multiple choices that we have in any given situation and what the results of each choice might be. A person may come to learn that there are times that “being who they are” is best put off until later or can be fulfilled by speaking up first. I have adapted this chart with several students and have often started with those times that I notice they are making a choice that worked out favorably. Then, I get into the choices that maybe did not work so favorably. Sometimes, I have to help with guesses but most of the time the kids will tell me if they have a better guess! Also note that the problem does not always have to be identified as “being the way that I am” but that I chose this example because that is what I heard from the mother that wrote in.

It is good you are looking out for this now. Getting practice and knowing he has people helping him will make a big difference. The negative thinking can be very destructive but being aware of it so early on is great. My brother’s story is very sad and can add to a lot of nervousness for many families. However, what you are doing now is something that did not happen for my brother until much later and the school was still not fully behind supporting him in the way he needed. At a young age my brother had severe behaviors but he still never received help. At the end, his school just saw him as complacent and lazy. I think he stopped fighting and having behaviors after a while because he was so defeated. Your therapist is on the right track thinking that your son needs to be able to express himself and be heard.

Having a diagnoses that falls on the autism spectrum situates a person and especially a child to be recipient to interventions and treatments that strive to mold the child/person to what society deems is acceptable, appropriate, and “normal”.  It is the idea of “normalcy” the tends to underlie the treatment goals and interventions. However, these goals often come at the cost of the individual… We may train a person to do what we expect of them but what happens if they still don’t desire to be the way we want them to be in spite of the fact that they have learned that is the way they “should be”? This question can be applied to so many aspects of what we teach and “train” kids to be and we need to find more ways to help these individuals critically consider the ways they want to be, the ways others expect them to be, and what the consequences are of either choice in any one situation. I am hearing more stories of these children that learn to be/act the way others think they “should”, while simultaneously growing up robbed of a voice about what they want. This, I do not suggest is at the fault of anyone but the scope of our society and the very limited scope we have about what is acceptable.

For more on my brother’s story click here
[This information is intended to inform others of some of the ways of working I have found to be helpful. If you wish to use any portion of this information please gain permission from Courtney Olinger, PsyD at colinger@respectrum.org and use appropriate citations and references]

TidBit- Insider Knowledge #1

Insiders are those personally impacted by autism spectrum disorders, either because they have a child or family member diagnosed or because they have a diagnosis. Insiders have a great deal of knowledge based on their own experience that can be helpful to others.

Insider Knowledge TidBits are small pieces of information directly from Insiders that can serve as a way to circulate information. We hope that this insider-knowledge is helpful to both those impacted directly and working with those impacted in finding ways to reduce the stressors associated with a diagnosis of autism.

Parent knowledges: A collective document of insider-knowledges of parenting a child with autism

As a narrative therapist, it is important to me that I find ways to continually reduce the influence of dominant discourse that elevates the status of a professional and diminishes the status on the client(s) (White, 2007). I take several steps to remain de-centred and influential so as to bring forth insider-knowledges. This means I am mindful not to take on a role of the ‘all-knowing expert’ while being aware and openly acknowledging that I do have knowledge and skills that I can utilise to be helpful to others who seek my services (White, 2007). The following are just some of the insider- (specifically parent-) knowledges that I have come to learn about when working with children with autism and their families.

I have compiled them by looking back through transcripts and notes taken during various therapeutic sessions with families of children with autism (including play groups, parent night, behavioural consultations, and family therapy). Whatever the context of my services, my questions are guided by my narrative theoretical stance and geared toward the deconstruction of dominant discourse in hopes to uncover and cultivate insider-knowledges. In reviewing these transcripts and notes, common themes were discovered. I have attempted to represent these themes according to key words that I heard expressed by clients. I have further sought to bring life to these key areas by supporting them with stories that were shared by clients.

It is my hope that a collective document (see Denborough, 2008) can serve as way to circulate insider-knowledges and hence elevate the status of the parent to that of ‘expert’. Perhaps other parents will find these ‘expert parent knowledges’ helpful and be able to add some of their own expertise along the way.

#1  Hold onto hope: Parents often reference Hope as a major factor in helping them get through difficult times. Sometimes this Hope is found in learning about stories of other families’ successes. Sometimes it comes by way of support from other parents of children with autism or outside supports. Sometimes it is found in the small gains that the children make. Whatever the source of Hope is, it is often talked about as an integral part of living in the world of autism.

Parents have had several suggestions over the years about ways to hold onto hope. When one mother was faced with a difficult situation that threatened to rob her of her sense of pride in her daughter’s achievements, she decided to ‘refocus her attention’ by decorating a bucket with pictures and words that reminded her of all the amazing qualities and achievements she had come to know in her daughter. She could then continue to fill the bucket with other things that represented such achievements. The bucket would serve as an ongoing way to refuel Hope. Another mother found that a journal of ‘the small steps’ was helpful in renewing Hope. She could not only visually see the plethora of gains that were adding up but also go back and review them whenever she wanted to remember how far they had come and that progress was possible. Yet another mother held onto Hope by seeking out stories of other families’ successes.

Olinger, C (2010) Privileging insider-knowledges in the world of autism. The International Journal of Narrative Therapy and Community Work, 2, p. 37-50.

The importance of ruling out seizures

When a parent first gets an evaluation, it is confusing, overwhelming, and frightening. Many parents have no idea what autism means or what steps to take. Recently, a new client called me after her child was given a preliminary diagnosis. She had been told to get a neurological evaluation and was not sure why. A neurological evaluation is important for several reasons.

One of the main reasons to seek a neurological evaluation is to rule out seizures. We know that seizures are very common among children diagnosed with autism. If there is seizure activity this could be one of the main causes of the child’s delays or it could be significantly augmenting behavioral issues. What many people do not realize is that  seizures do not always present as violent shaking. Some seizures are marked simply by the person losing time. They may stare of into space or have an absent look on their face for a period of time.* Sometimes, there may be little to no indication that a seizure has occurred and only brain wave technology can show whether a seizure has occurred.

*Caution: Staring of into space or having an absent look does not always mean a child has in fact had a seizure. Get more information for what to look for. For more information on seizures (provided by Southwest Autism Research & Resource Center) click here.

Here is a brief lecture on the possibility that seizures are being missed when working with individuals diagnosed with autism and other developmental disorders. **This is not an endorsement of what is shared in this video. The link is shared to provide the public with information about research and services that are out there.

COMMENT ON THE LECTURE: The speaker makes a very valid point that autism and many other developmental disorders are diagnosed solely on the basis of observable behaviors. There is general consensus in the medical and scientific community that these are neurological disorders that can be seen by brain mapping and MRI scans; however, a neurological cause has not been found. Autism is a behavioral diagnosis which means that if the behaviors are there (to the extent that criteria calls for) the diagnosis is made. When causes are found for disorders, diagnostic criteria is updated. To date, no updates to criteria have been made. Irregardless, seizure activity is a real possibility and may be causing or worsening the symptoms a child is experiencing.

The Power of a Transitional Warning

Those of us who have worked with children diagnosed with an autism spectrum disorder, no matter what level of language or needs, have been privy to the power of a transitional warning. To us it comes natural and seems like a no-brainer but for several it is an undiscovered gold mine.

People with autism spectrum disorders often have difficulty with transitions. They experience extreme unrest and discomfort when having to move from one task to another, from one place to another, or from one experience to another. Transitions often signify moving from known to unknown or simply a change in expectations. Difficulty with transitions can lead to tantrums, extreme anxiety, complete shut downs, increased behaviors, and other problems that can significantly interrupt the family’s day, the classroom schedule, or a quick outing. Yet, these transitions are often so taken for grantid everyday that it is hard to understand all that truly goes into a transition and how upsetting it can be for some.

Think about the anxiety that comes along with going to a new place with many people you don’t know. Now imagine if you were dragged to that place after you had calmly been engaged in one of your favorite activities in the comfort of your home. This may be how unnerving transitions feel for your child. A transitional warning can help your child prepare for the change.

Fortunately, there are simple strategies that can be implimented that can help with transitions. I say “simple” because I am used to them-  they are ingrained in every interaction I have with children and individuals on the spectrum. Yet, they take time, they take mental preparation and they take thinking ahead. We all know this is not always easy but in the long run, the extra minute or two that you take can save 45 minutes of a tantrum.

The power of the transitional warning rests in the fact that your child needs to know what is going to happening. It helps if you can take steps to help your child know what is going to happen. Transitional warnings can be count downs, minute warnings, timers, or repetitive statements that help the individual stay calm as they move through the change.

Below are some suggestions for Transitional Warnings and ways to integrate them into everyday life or independence.

  • Minute Warnings/Timers: Your child may need a 5 minute, 2 minute, or 1 minute warning before there is a change. Sometimes children need a combination or minute warnings and/or other transitional warnings.
    • Classroom teachers often use 5 and 1 minute warnings for a good reason. These warning help the children prepare of a change. In the classroom they know that the warning comes and then the change comes. They get used to this. Eventually, the minute warnings become routine, even if the next task is not.
    • Such minute warnings can be done anywhere and will make a difference for the child that has difficulty transitioning. Try to give minute warnings for all transitions, especially when going from a very motivating activity (e.g. TV) to a not-so-motivating activity (e.g. clean up, therapy, leaving the house, etc.)
    • The beauty of the minute warning is that you can give it from afar; although you will want to look for some indication that the child heard you. With some children you will have to give them minute warning closer to them with little distraction.
    • You may need to start with multiple minute warnings but the goal is to eventually be able to do a minute warning and then either fade it out (stop needing the transition warning) or teaching the child how to keep track themselves.
    • Timers: Fading out can be done with the use of a timer that makes a sound (This becomes a great training for the school bell) or a visual timer (e.g. timers that show red area on a clock getting smaller as the time gets closer to the transition).
    • The best timers are portable and can either be clipped to your belt or the child’s belt. They even have timers that vibrate now so that the noise does not disrupt the classroom. I do not recommend the old wind up kitchen timers- those tend to break easily. Digital timers can be found at local grocery or hardware stores and are pretty affordable. If you find yourself out in the community and you forgot your timer most cellular phones have timers or alarms you can use to mark your transition.
    • Do not start with the timer as the transitional warning alone. You will need to tell the child as you set it. If you just set it and it goes off you have missed the warning part and have only highlighted the transition part. Remember the goal is to fade to being able to transition but the warning is a step that cannot be overlooked.
    • For independence : You can use time as your cue (and simultaneously teach your child a valuable skill). Once you start with small your child can learn to keep time to help his/her self transition.
      • Use a digital clock.
        • Even if your child doesn’t know how to tell time this can be helpful. They will need to have number recognition skills. Show the child a clock and let them know what numbers signify transition time.
        • Sometimes I write it down as well. (e.g. the digital clock says 6:36 and I write 6:41 so that the child can match it when it is time to transition). This tends to take the control away from the adult and it is no longer in my hands that the clock says it is time to transition (word of warning- be careful with the kids that know how to change the clock- this has happened more than once with several of the kids I work with.. they catch on very quickly!!!!)
      • Use an analogue clock.
        • Your child may be able to recognize the numbers on the clock and you can simply point this out to him/her.
        • If he/she does not recognize the numbers simply point out the positions the arrow needs to point.
        • You can use a visual marker such as a sticker or arrow post it to show when the transition will occur
      • You can get your child a watch.
        • Have your child pick out a special watch just for him/her to keep time. Pick a format (digital or analogue) that suits your child’s needs. Perhaps you can find one with a timer.
        • Your child can learn to set transitional reminders for his/her self.
  • Count Downs: 5 to 1, 10 to 1, even counting up helps tremendously
    • Sometimes the 1 minute warning is not enough in the beginning and a count down may be needed. I tend to use a 5 to 1 count down.
      • I often use a visual cue at the same time that I count. I show my 5 fingers open wide in the child’s view and fold down a finger with each descending number.
      • Some people use 10-1 or count up. The manner may not matter as much as the consistency. The count down needs to occur when you are close in proximity and you MUST make sure the transition immediately follows.
    • This transition can and SHOULD be used for closing a book, turning the TV off, handing over a toy, giving over a highly motivating object, etc. and the child should complete the transition, not you.
      • Here’s an example: 1) you get close, 2) you count down and 3) the child turns off the TV.
    • This may require that you hand over hand prompt the child to do it but he/she should be the one transitioning.  This helps the child feel a sense of control over the transition. ***Do not take the object away but hand over hand prompt the child to put it in your hand.
    • These count downs can be used everywhere and the beauty of these is that they are your backup if you forgot to do the minute warning and don’t have time to delay another minute!
    • YOU WILL BE AMAZED AT HOW QUICKLY YOUR CHILD GETS USED TO THE COUNT DOWN!
  • Repetitive statements, cues, or “code words”: Some children can learn to prepare for a transition with a phrase or word used as a cue.
    • If you don’t want to be confined by time you can teach your child a cue that will signify transitioning. You may not be able to start with the cue as your only transitional warning but could combine it with the minute warnings in the beginning.
      • Here’s an example: You tell your child “Almost time. 1 minute until we leave.” one minute before you leave your house every day for 10 days. One day you simply say, “Almost time” and your child starts to put things away.
      • “Almost time” has become the cue and you no longer need to say “one minute” or even keep a minute time. This allows some flexibility.
      • Any word or phrase can become a code word or cue!
    • First/Then Statement: Usually “first___, then____” statements are used to help a child finish a task before getting something motivating. You might say “first, eat your peas, then you can have dessert” but First/Then statements can also be a handy tool to prepare a child for a transition. Instead of a minute warning, you could say “first we need to clean up, then we are going to get ready for bed” or you can shorten it (especially for our younger kiddos) by saying “first clean up, then get ready for bed”. Using First/Then statements consistently becomes a known marker that helps the child cope with transitions. Sometimes using a visual for a first, then transition is helpful.
    • Sometimes repetitive phrases like “its okay. Its time to go” can be taught as a way for the child to self-regulate when there is a transition. Variations can be used and can be tremendously helpful for a child, again because the repetition eventually becomes the routine and turns an unfamiliar moment into a familiar one.

Transitions, big and small, happen every day. These are ways to help with the beginning of transitioning that can be implemented throughout your day. Try it out for a week and I bet you will also see the power of the transitional warning.

For larger life transitions see the previous TidBit titled “When your child is starting a new class or school” for some strategies. This format can be adapted to community outings, trips to new stores, vacations, and more.

When your child is starting a new class or school

Many children with ASD have difficulty with change, transition, or simply something new.  When they do not know what to expect or what is happening there is a sense of unease and anxiety can sore through the roof.  When anxiety is high these children are not in the best position to learn, succeed, or even enjoy themselves.  Behaviors may rise in school and at home.  One way to reduce some of this anxiety and hopefully prevent some of the escalation of behaviors is to prepare your child.  Here are some suggestions:

  • Ask your school if the child can visit their new class before school starts.  Most schools and teachers are happy to do this as it helps the child become familiar with their new setting.
  • Tell your child a day before the visit and right before the visit that he/she will be going to a new place to see the new class.  Remind him/her right before the visit.
  • Try not to place any demands on the child when they go into the classroom.  The goal is to have a pleasant experience in the new class.  Take the child around the room to explore and play.  Reinforce him/her for just looking and keep reminding him/her that this will be the new class.
  • Allow your child to bring something into the class (for the visit and maybe even for the first few days) that he/she is familiar with.  Some kids may want to carry a toy or just be with someone they know.
  • Have your child meet the new teacher.
  • If you can take pictures of your child in the new classroom, at the new playground, of the new teacher, and of the school building.
  • If you cannot take your child to the class/school or cannot take pictures of your child at the location it is still a good idea to take pictures to show the child. I often put these into a social story or even just a one page board. Here is some of the information you can include:
    • My name is ______________ (add picture of your child)
    • I will go to a new class (and/or school) next year.
    • My new school is called ___________ (add picture of school)
    • This is my new classroom. (add picture of classroom, door to class with number, and/or child in the classroom)
    • These are toys/activities I get to play with/do in my new class. (can add a picture of just the toys, tables, or if possible the child playing with something in the class)
    • This is the playground I get to play on. (add picture of playground)
    • It will be different but I will do my best. (good sentence to add to encourage the child to deal with difference)
    • I will have lots of fun in my new class! (good sentence to include to reinforce the move to a new class)

Once you have your pictures, you can talk to your child about the change.  Begin to prepare him/her at least a week before, talking about the new school every day for a few minutes. (Don’t talk too long. If it becomes a task that the child experiences as negative you run the risk of setting the child up to not enjoy the new class)

***This format is encouraged for preparing your child for all sorts of changes and new experiences.  It is important to prepare your child and will help set up the family for a positive experience.  You can use these ideas to prepare for vacations, trips to new places, and changes in activities.  Sometimes, simply searching for pictures on the internet and cutting and pasting pictures of your child work just as well.