Your Child's diagnosis, becoming an expert

The community I was from is set up for autistic people, people like me, to fail. One of the big issues in a minority community is that mental health is not addressed and no one believes in it. The resources are usually not available or difficult to find for people in minority communities. There are also long-standing traditions of mental health denial because of a “pull yourself up by your bootstraps” mentality. Because minority communities have often faced severe oppression and suffering in many ways, they have built an ideology about being strong and not helpless or weak. This has had many adverse effects on the mental wellbeing of the people within those communities.

Your Child's diagnosis, becoming an expert

Since mental health was somewhat of a myth to the community, it was a struggle I endured in my entire life.

I’m an African American male who comes from a community where if you displayed behavior that is associated with a mental illness, you were punished. African American communities often believe strongly in going to church, and they will tell you to pray about it and not seek help from a mental health professional. If you seek help from a mental health professional, you are viewed as weak. They tell your child to “man up, it’s all in your head, you’re making it up, etc.”

It’s hard to accept a mental health diagnosis in the Black community because of traditions we have been taught with.

Nobody in my community accepted my autism diagnosis, and I was ridiculed for seeking help. It was not until I was 22 years old, when I had my third suicide attempt, that I received help and support for my autism and other disabilities.

Today, to help others avoid this struggle, I have composed a list of ways you can accept your child’s diagnosis no matter how severe it is. Remember, you can be victorious and become an expert and advocate for your child.

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Many say that Asperger’s isn’t a disability, it’s a different ability and I completely agree. We all know that children and adults with Asperger’s bring so many unique gifts to the table. With that said, it is important as a parent that you understand and truly believe that statement. You need to take that thought and hold onto it because as a parent trying to help your child navigate this world, it isn’t always going to feel that way.

Child with balloons

It is our job and right as parents to worry in general, but during times of struggle it elevates a little, okay a lot, and your worries and fears stretch far beyond the soccer field. The game plan, the therapies, and the progress are all part of your life too. The struggle lies in the fact that the plan will need to change, that was once right no longer will be. Just as you think you are smooth sailing, a small change in life may cause the need to reset everything.

Many people see children with Asperger’s and they don’t understand that their needs are lifelong. They don’t see that even if you watch your child succeed at a young age, there will be new territory to navigate as they get older and new situations arise. Of course every child is different, heck every person is, but there is a big underlying root of anxiety, fear, and discomfort for those living the Aspie life.

Perhaps that doesn’t make you feel any better and might even scare you more. I’m sorry if that’s the case, but I truly believe it is important to acknowledge all of the feelings and territory that come with the job. This is a job that comes with a lot of hard work, confusion, sadness, worry, and readjusting. There are going to be days when it doesn’t feel like “a different ability” for you or your child and you need to allow yourself to feel that.

You need to hear and find others who know the guilt that you may sometimes feel when you doubt yourself.

There is a guilt that you feel when you are sad for your child during times of struggle, and when deep down inside you wish that struggle wasn’t there. You will have people tell you that all children struggle, which they do, but it won’t help or bring you any comfort. There are days that you will just feel lost and you will cry.

No matter what happens in life, one thing will always remain true. You will find a way to help your child and come up with a new plan to address life’s new obstacles. You will always rediscover your footing and help them do the same. You will always love and adore your son or daughter and you will never stop fighting for them.

While some days or time periods may scare you or even bring doubt, you will always once again feel that Asperger’s is simply a different ability, and those are the moments that are going to carry you through.

So even if you don’t feel it at the time, always carry that thought with you because I promise that the storm will pass and once it does you are always going to need the reassurance! It may be a wild ride, but the times that you get to celebrate that extra “ability” and triumph are what makes it all worthwhile.

By Jessica Nieminski

disclose in the workplace

In previous blogs we have discussed full disclosure of your disability, partial disclosure of your disability and different ways to go about deciding whether or not you should disclose. In the last blog we talked about the SODAS method for disclosing. One of the options was to not disclose it all.

disclose in the workplace

Some individuals that I work with feel like like this is the best route to go when they start a new job. If you choose not to disclose, as I have said before, it is a personal decision and should be carefully considered . . .

If you choose not to disclose, ensure that you have a strong support system that is made up of family, friends or other individuals that can help you if you start struggling. This way you will have an outlet to work through your struggles.

Some choose not to disclose immediately, but realize within the first few weeks that they have some concerns, and choose to disclose their disability before it becomes a problem.

Sometimes we have disabilities that don’t affect us at the workplace. This can be a good reason we choose not to disclose.

Just remember no matter when you choose to disclose make sure that you are telling the appropriate people. An example of an appropriate person to tell would be human resources. If there were no human resources at your company, which is common in small companies, you would tell the manager or person that is in charge. This should be kept confidential on their part and you should feel comfortable getting the support that you will need. Sometimes you may need to have documentation of your disability and what accommodations you might need so that they can help you.

by Maggie Cromeens

In a previous blog we defined full disclosure of your disability, and accommodations. Often times individuals will have more than one disability, but only one of them may be a concern in the workplace. What I mean by this is that one disability may stay hidden while the other one is visible.

SODAS Method Choosing Disclosure

As I have worked through the disclosure process with my clients, they frequently only want to let one disability be known. To work through this we often use the SODAS method, which stands for: Situation Options Disadvantages Advantages and Solution.

The following is an example of the SODAS method:

Situation: I have more than one disability and don’t know if I should disclose all, one, or none

Options: 1) Full Disclosure 2)Partial Disclosure 3) Non-Disclosure

First you list the disadvantages to each of the options.

Disadvantages:

  1. Full Disclosure – I may get made fun of, or discriminated against
  2. Partial Disclosure – They won’t be aware of my other disabilities that may affect my work
  3. Non-Disclosure – I will have no additional support

Next list the advantages to each of the options.

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We’re often asked if individuals on the spectrum should disclose at work. While we at ASTEP have our personal views on this topic, what we do is help each individual think through their situation and come to a decision that is comfortable for them. The below blog post is one of the best we’ve seen by an individual sharing their experience about being someone with autism in the workplace, and what that means when disclosed and when not disclosed.

You can find the original post from The Guardian here.

Not everyone wants to be a part of the office Secret Santa. Photograph: Getty Images
Not everyone wants to be a part of the office Secret Santa. Photograph: Getty Images

A late diagnosis of autism meant I struggled with the alien codes of small talk and office politics – until I started work at an autism charity.

I was sitting in a doctor’s office, describing yet again how a day at work could be hell. I told him why sharing the same space, listening to my colleagues’ music/small talk/breathing drove me mad and why someone saying “good morning” could feel like a personal invasion. The doctor was new, young; he gave a nod of recognition and then he said something strange: “I think you may be autistic”.Continue Reading

One of the most common concerns when working towards employment, interviewing and accepting an offer is the decision to disclose your disability or not. This a very personal decision, and one that you should feel comfortable with.

Many concerns the employment seeker has can include:

Will it affect how I am perceived at work?

Will others judge me?

Who do I disclose too?

When do I disclose?

In the next few entries I will discuss answers to the aforementioned questions. I will address the different types of disclosures – such as full disclosure, partial disclosure and not disclosing – as well as what to do after you answer yes to the question: “Can you do this job with or without a reasonable accommodation?”

By: Maggie Cromeens

October is National Disability Employment Awareness Month, and as an employment specialist who strives for equal employment for everyone I work with, this is a great month to celebrate how far we’ve come. Although the numbers are not where they should be in regards to equal employment…things are changing.

I hope that the blogs leading up to this one have helped, or can help you in the future as you strive toward employment. Let us celebrate our unique and wonderful capabilities. Instead of letting our difference hold us back, let it be something that, in the words of Samuel Allen, “Gives us wings.”

Here is a great website that talks more about this month:

http://www.whatcanyoudocampaign.org/blog/index.php/ndeam/

-Maggie Cromeens