Friday, May 13, 2011

Autism Diagnosis Disclosure: When, Where and How - Part 1

Hello Blog Friends, I hope that you are having a wonderful spring so far. Here in the great Northwest, the sun was out today and it was in the mid 60s. Many units get pretty active here in the US and our unit is no exception. 

This year the older boys will be headed off to Philmont (one of four high adventure camps for scouts in the US) and the younger boys will be headed off to Camp Parsons which is located on Puget Sound on one side and Olympic National Forest on the other.  I hope no matter what kind of scouting unit you are attached to (Girl Scouts, Boy Scouts, Cubs, Venture Crews, Sea Scouts or your religious scouting group) you have a safe and fun time. For those of you south of the Equator where winter is going to settle in, may your units there have just as much fun. 

I want to thank everybody for all of your wonderful comments and for all of the suggestions that I have been getting.  One of the questions which I will take up is about what leadership positions might be right for somebody who is on the autism spectrum and when he/she might be ready for that position. Look for that one coming soon. 

Tonight, I want to address one subject that I have been thinking about a lot and I know many parents struggle with. Who should we tell about our scout’s condition, what should we tell about his/her condition and when should we tell about our scout’s condition?

As I was writing this blog tonight, it became clear that I could just keep going on and on and on. This is a very sensitive subject and so important that I want to do it justice so I will be doing this in parts. 

Part 1 – Before your son or daughter starts scouting, some basics in disclosure to leadership.

Part 2 – My story and our family’s choices now and in the future

Part 3 – Additional disclosure issues once your son/daughter is a Scout. The choices go on.

First, let me say before we start that these are my thoughts and reflections about the subject which I have thought about many many times and will continue to have to deal with as my oldest progresses in Boy Scouts (he has Aspergers) and when my youngest starts as a Cub in the fall of 2012 (he has autism).   This is a real issue for our family and for many who work with and support those with autism. If you have any questions now or anytime along during the writing of these blogs, let me know. We are all here to learn and grow to help our scouts and I am learning all the time. I look forward to hearing from you and your thoughts on the subject. 

Before you get started
I have heard variations of this saying since the early days after our sons were diagnosed and the saying really rings true. When you meet one person with Autism, you have met one person with Autism. Every single person with Autism is different. There might be general characteristics and symptomatic behavior which is similar but when it comes down to it, every single person is different.  Some are verbal, others are semi verbal while others are non-verbal.  The functionality of each is widely varied.  The co-morbidities that each on the spectrum may have are just as varied. Some may have ADHD, OCD, eating issues, sensory issues, depression and/or other disorders or conditions to go along with Autism / Asperger’s while others may not have any / many of these conditions. 

What I am trying to get at is that the parents know their scout better than anybody else, since they are the ones who are living with them and have likely done their own research as well. It makes sense that their input is incredibly valuable in knowing what accommodations their scout may need. 

Meeting with the Unit Leader
Even before your potential scout joins or starts in their scouting journey, I would strongly recommend a meeting with the unit leader in private.  In Cubs, if you are not the going to be the den leader, you should include them in the meeting. In Girls Scouts, it would be the group leaders.  You should also include the Committee Chair if he/she are available.   I would also suggest in the case of Boy Scouts/Girl Scouts or other Youth Leader groups that you include the top youth leader in the meeting or at the very least have a separate one with them after you have met with other adults. Many of the older youth scout programs have youth leaders. 

In this initial meeting it will be up to you to decide whether to include your potential scout who is going into the unit. It might be advantageous to have this meeting just with the leadership to have a more open and frank discussion of the needs and issues of your scout. 

After this meeting if you feel Scouting is a good fit you may want to set up a brief private introduction between the scout and the leaders so they can  get to know each other first hand.  This will also allow the scout who may or may not have transition issues to become more familiar with some of the leadership. 

Here are some things to be aware of going into the meeting with the unit leaders and to go over during the meeting.

Go into the meeting with the understanding the many have never worked with somebody with Autism or if they have, they have not worked with your scout and his/her version of Autism.  

Be aware that these people are volunteers and give up their time to serve the units and the scouts. Do not treat Cub Scout Den Meetings as Respite care.  This is something that all scout parents should know that meetings are not babysitting. Most leaders do really care for the well being of the scouts in their units and want to see them be successful but appreciate the parents involvement as well. 

If you don’t tell the leaders of a known issue or trigger or condition, they will not be in a position to help your scout. Let them know all the information that will allow your scout to be successful. 

Let the leadership know who else can be aware of your scout’s condition within the local unit. It may be required that either a district or counsel be aware of any special accommodations. 

If you need special accommodations, a quiet room in case of a meltdown or sensory issue, adjustment of lights or any other special need, let them know. If the leaders are not aware, they will not be able to help you and your scout. 

Let the leadership know of any dietary issues that your scout has, food issues are very common with those with Autism and many times at the younger levels meetings may include snacks. It is better to have the leadership aware and prepared to have something on hand so the scout doesn’t feel left out. 

In the meeting talk about your level of comfort and your son or daughter’s level of comfort in potentially having others in the unit know that your child is on the autism spectrum. This is important because you want to balance the privacy of you and your scout with the empowerment of the unit.  I have found in life, people have a harder time accepting things they don’t have knowledge of but once they receive that knowledge or are enlightened, things then become less strange and those people can better accept and embrace those things.  

In some cases where the Autism is more pronounced or there are other medical issues or co-morbities, it may be helpful to have a talk with the other scouts and leaders to let them know about the needs of your scout in advance where in other cases having the leadership be aware is all that is needed. 

It comes back to you know your scout the best and as your scout’s number one advocate need to weigh what is best for your scout.  The leadership is in place in both youth and adult groups to see your scout be successful and to be part of an organization that is meant to be inclusive and welcome. That may not always be the case but that is the goal. (This is a topic for another time.) 

It is so important to have this meeting with the leadership to let them know what you need, what your scout needs and what you can do to help the unit be successful as well. Think if you were to go into a school and not have an IEP meeting which included the teachers. They would not know what the student needed or how to take care of issues or avoid issues all together.  They would not be best prepared to teach your child. This is a similar thing and if you don’t have a meeting with the leadership, they will not be prepared to help them grow. 

Health Records Required
In the United States (Boy Scouts, Cub Scouts and Girl Scouts) and in Australia (from what I understand from a good friend from down under) when joining scouts, each scout needs to fill out a full medical form. I would assume that all scouting units throughout the world would require the same thing for liability. All of these forms are confidential but they should be seen and reviewed by the unit leader and/or somebody who has been designated by the unit leader to maintain the health records. 

You need to take into consideration your scout’s conditions, abilities, communication issues, all medical needs as well as triggers.  Although  family privacy and your scout’s privacy is important, when it comes to medical records, the parent or guardian needs to be fully honest and list all conditions that the scout has. 

Now that you have the meeting with the leadership and health records turned in, you will hopefully have a solid basis to move forward. This issue of who to tell and when is not over just because you have had a productive meeting with the leadership, this issue will keep on coming up. 

In my next installment, I will share my story with my oldest and what plans I have for my youngest.  Both boys have autism, both boys are unique and as such things will be different for each. 

In my last installment, I plan on taking on the issue about additional disclosure issues once your scout has already joined scouting. The story goes on. 

I hope you enjoyed the first installment. I will be posting this on the Autism and Scouting Facebook Page and Group and if you are not yet a part, please feel free to join both. We would love to see leaders, scouts, parents take part in this road less traveled (but it is getting more crowded). 

Support your Scout!


  1. A great start John. One thing that I find problematic is that as Akela (the main cub scout leader), I get to see the forms - I need to for dietary/allergy/medications reasons.

    I'm always a bit unsure about whether or not I'm allowed to tell my other leaders. On the one hand, that information is critical but on the other, I'm not sure that it's my place to make a call about who needs to know. Some parents would consider it an invasion of privacy.

    I think that maybe I need to approach the parents after they submit the form and ask or their permission before passing the information on. Is that how you do it over there?

  2. John-very good information. At the very first campout that our son attended as a Boy Scout, we sat down with the Scoutmaster, Committee Chair and another adult leader and told them what to expect with our son.

    I made sure that for the first couple of years, I was with him at the monthly campout or at Summer Camp. For the first campout that I couldn't attend, we asked that another trusted leader that knew our son could keep an eye on him. We don't worry about that any more.

    By the way, our troop currently has 3 boys diagnosed with Autism and one other with Aspergers. We've done a lot to educate the leaders that all 4 boys are not alike and they all have strengths and weaknesses that are unique to them.

  3. Gavin,

    I think all scout groups are very protective of medical information and are sensitive to privacy issues.

    In the case of dietary/allergy whenever food is concerned, the questions are always asked if anybody has allergy issues. Normally, if a unit leader sees something that may be of concern as far as a medical condition, I think it proper to go the parent and ask permission to share it with the leader or leaders that it may impact. Explain that it will give those leaders more power to help those kiddos.

    When the kiddos go off to camp, they are required to have a medical form and the camp medical staff has to be aware. I will be doing part two on Saturday which was how I took care of these issue with my oldest and what I plan to do with my youngest. Good tease.

    I want to personally thank you so much for all that you do. You are a wonderful leader and I am honored to know you and work with you on these issues.


  4. Rob,

    Four in one unit. I honestly think that the rate that we see Autism in Scouting and everywhere else will rise.

    I am not sure if you saw the one South Korea study. 1 in 38. I am not saying it is that high in the US but it is higher than the 1 in 110.

    It sounds like our stories are somewhat the same. I will be doing a new blog on Saturday.

    Thank you so much for sharing.