Your Child’s Been Diagnosed – Now What?

Whether you sought a diagnosis privately or been on a waiting list forever until you got answers, an Autism diagnosis can still blow the wind out of you. Even if it’s something you were expecting.

What do we do? What will happen in the future? How will we cope? Do we have the finances for this?

So many questions go through your mind, so I’m here to hold your hand and walk you through it.

First of all, take a deep breath and remember this isn’t a death sentence. Life will be different than what you expected, but not bad. You will find a new normal.

My number one piece of advice for those in Quebec is to march over to your nearest CLSC and ask for a social worker. Not all are created equal, but for the most part they help open doors to funding and services. The tricky thing with them is they don’t always know all the available services so you almost have to know what to ask for in order to receive any help. Daunting, I know! But I will give you a few starting points:

You can ask for funding for:

-Respite care

-Diaper supplies

-Housecleaning

-Communication aids and electronics

-Home modifications

-Subsidies

-Transit and accompanyment

You can ask for services, such as:

-Summer camps or after school clubs

-Playgroups or therapy

-Respite weekends

-Counselling

-Special educator visits or OT at home

-Help finding a daycare

This is a starting point. Now you get to think about the next couple of months. Don’t think too far ahead because we change quickly. Autistic people do develop at a different, sometimes slower, timeline, but we do eventually get there. What you’ll often see with us is no changes for a while and then a sudden spurt of development. That spurt may also cause us to lose some other previously acquired skills for a while, but don’t worry, they’ll be back!

So you can go from needing speech therapy 3 times a week to needing it once, and then needing it twice later. No worries, just try to go with the flow. Just plan out a few months at a time and reassess each quarter.  

Try to plan out how many hours of respite (babysitting) you need each month, how much therapy you think your child needs and who will care for your child during the day (if you work). Then you check to make sure you have someone covered for all those things. Also try to have back up people on top of that (babysitters get sick!). Also make sure one person is not getting stuck with too much (including you!). You will need help and support! Ask for help, don’t try to go it alone!

Join online support groups, get references for reliable helpful services, and learn as much as you can from Autistic adults.

When you’re ready for extra resources and tips, call meūüôā

Also please remember, if you are ever so overwhelmed that you have thoughts or fears of hurting yourself or your child, go to a safe place and call 911 or head to your nearest CLSC or hospital. Don’t ever think there are no other options or no way out. You need to take care of yourself. You are not alone on this journey!¬†

 

 

 

 

The CN Tower from Porter Airlines plane in Toronto at Billy Bishop Airport by @KBronJohn Copyright 2015

The Autism Friendly Unconference 2015

I heard about the Autism Friendly Unconference only about a week earlier, so I booked a last minute trip to Toronto to attend this weekend. The theme was Life After High School and all about work and transitions.

I arrived a little late but everyone was very welcoming and I picked a green pin for the day. Green was for Autistic people who were comfortable being talked to and open about autism. There were red pins for Autistic people who did not want to talk, and blue pins for allies. This made it very easy to see who was who.

The conference opened with a few of the organizers introducing themselves and telling us a bit about their lives. Then we jumped right into the workshops of the day.

The first one I chose was Professional Relationships at Work and we shared our experiences about navigating the social issues of work, as well as interviewing. A lot of people were unemployed or under-employed. It’s heartening to hear so many people having the same struggles and know we’re not alone, but at the same time, there seem to be no easy solutions.

The next session I attended was about Sex and Intimacy. The discussion ended up being more about dating and navigating how to find like-minded people. Again, I really related to a lot of the experiences shared.

Then lunch was provided and I spent a large part of it in the sensory room. It was great. There were bean bags, soft blankets, lights, and fidgets to squeeze or play with. I took a video:

I’m in the #sensory room at the #Autism Friendly conference. Shhhh. #Lights

A video posted by K Bron John (@kbronjohn) on Aug 15, 2015 at 7:35pm PDT

The session right after lunch was called Advocating for Yourself in the Workplace and it was run by a neurotypical, if I’m not mistaken. Slightly ironic because he made a snap judgement on some people who were colouring while listening. It was handled extremely well, however.

Finally, everyone who was left at the end of the day got together in one room to talk about services and what can be improved for neurodiverse adults. We spoke a lot about doctors not taking us seriously, especially when it comes to chronic pain and mental health issues. We also spoke about police violence. Some good constructive ideas came out of this, but I will let Every1Games disclose it when they are ready.

I was really pleased with being able to attend a free conference and I met some really cool people I hope to stay in touch with. Being an out-of-towner makes it a little more difficult, but through Facebook, I think we can keep the connection and flow of information going.

The team at Every1Games did a great job of making everyone feel comfortable and safe and I’m inspired to see what kind of things I can accomplish locally to build a similar community.

a man sits in an office in front of a computer screen with his heads in his hands, overwhelmed. Image from AutisticExpert.com Interviewing While Autistic 2015

Interviewing While Autistic

I have had 6 in-person job interviews in 2 weeks, with another one scheduled for next week so far – hoping to book some second interviews in there. There are of course, lots of calls, phone screenings and emails. I am, quite frankly, exhausted.

Having to sell yourself constantly and think about it, is tiring. I am constantly questioning in my head, am I sitting properly, is my body language open, am I making adequate eye contact, am I talking with my hands too much, am I smiling enough or too much, did I just say the right thing or the wrong thing, how was that perceived?

Towards the end of an hour, I start losing eye contact – my eyes just want to shut, they feel heavy. So in response, I start blinking, probably too much, but it’s the only way I know how to keep them open. Otherwise I presume I look like I’m falling asleep. Of course, I don’t want to look like I’m falling asleep! I am interested! It’s just fatiguing maintaining these actions.

So I come home and all I want to do is sleep. Instead today, I am writing this now so the feelings are fresh in my mind. I am still fighting to keep my eyes open as I write, “perched”- as my husband says – on my kitchen chair. I look like a little bird squatting, with my feet on the seat, my knees up against my chest. I am almost in a ball, except for my hands out and typing. When I pause and look away from the screen, the world around me has a funny haze around it. I close my eyes at times, to get away from the visual disturbances and continue typing. I know my keyboard so well, I can type with my eyes closed.

What I will probably do, rather than actually sleep, is something “brainless,” which for me means scrolling through Facebook or just sitting in my rocking chair in the quiet. If the weather were warm enough, I would go out back and lie in my hammock, and probably fall asleep there. If I were anxious (though I am not), I would play a “brainless” game like BeJeweled Blitz or LINE Pop to “turn off” my mind. Regardless, I will need some time to relax and recover. Writing helps to some extent, as it helps me clear my mind and organize the many competing thoughts.

As for disclosure in interviews. I don’t have a set strategy for this. I leave it almost up to the spur of the moment. In some places I have felt safe and comfortable enough to disclose right away. In others, I chose not to. I’m not always sure how relevant it always is, as I don’t really ask for tons of accommodation. Some situations are best explained in the moment.

What is great to me is when HR brings it up themselves. I don’t hide myself on the internet. I don’t hide the fact I maintain sites/blogs/Facebook pages devoted to autism. If you do a search of my name, you will get my Huffington Post article. A good HR professional will do a thorough online search, find me and know who I am before even meeting me. Some choose to ask about it in interviews, some don’t. If asked, I will explain.

I don’t think my autism prevents me from doing good work the vast majority of the time, providing no one is concerned about how I get things done. I prefer to work in quiet. I prefer to manage my own time/tasks during the day. This doesn’t mean I can’t function in other situations, but I will definitely do best if left alone in a quiet room. I do not mind occasional conversation, but I do not require as much of it as others do.

an outline of a black coffee cup with white text stating:  'It took me a long time to learn that when people ask to “go get a coffee” it’s not necessarily because they want to get coffee, it’s because they want to talk and/or don’t want to go alone (and for ages I said, “no” because I don’t drink coffee!).

I know disclosing could mean I don’t get as many offers, but in the end, I would rather not work with a company that was not open to working with me and understanding me.

I will let you know what comes of all this! This is just a little peak into my experience. Interviewing is stressful for everyone, I would think, but it definitely is very taxing on me.

autism lingo 101 on autisticexpert.com

Autism Lingo 101

There are many common terms you’ll read on autism blogs or groups that you may not know the meaning of right away. I’ll be your autism dictionary! Ask me if you come up with others!

Stim¬†– Stim is short for “stimming,” which is also short for “stimulation.” When our bodies either lack or have too much outside stimulus, many of us will do certain repetitive behaviours in order to calm down. “Normal” people do them as well, things like tapping feet, biting nails, chewing pen caps, knitting – those are all more “socially acceptable” stims. Other people may fidget, dance, hum, or repeat words. Some pick their nose. Some pull out their own hair.
Usually, if you try to stop someone from stimming, it will only make it worse. Or they may stop one behaviour only to pick up another one. It’s best to let people stim for the most part, unless they are really hurting themselves. The moment will pass, and most people come up with more socially acceptable stims on their own, in order to avoid being stared at in public.

Social Hangover¬†– This is what happens when us Autistics try to be social. It’s exhausting for us, so after all that effort and overstimulation, we often need a few hours or days to recover. Sometimes I feel drained after a day of work and need to tune out. Sometimes, if I’ve gone out to a party, I need days to get back to normal.

Spoons¬†– The term “spoons” originated with a post by a woman with a chronic “invisible” illness, lupus, explaining to others how she has to allocate a certain amount of “spoons” each day in order to function. A non-disabled person has more spoons than a disabled person. A disabled person doesn’t know when they wake up, how many spoons they will have for the day – some days less, some days more. Getting out of bed and getting dressed takes up more spoons. Getting groceries takes more spoons, and so on and so on. It could be lunch time and you could be all out of spoons! So if a person says, “I’m all out of spoons for today!” they cannot cope any more. They need to rest or go home and wait til tomorrow when they’ll hopefully have some more.

Normie¬†– A “Normie” is a derogatory term for a “normal person” or neurotypical person. It’s not a term most Autistic people use unless they are really angry at a neurotypical.

Curbie – “Curbie” is derogatory word for people who believe autism can be cured.

Neurotypical or NT¬†– NT people are those who have the brain of the majority – non-Autistic, non-learning disabled. This is not a derogatory term. It’s nicer than saying “normal.”

Neurodivergence РOr the Neurodivergent Movement looks to celebrate our differences and have people come to an acceptance that some brains are different than others, but no less important. The Neurodivergent Movement includes Autism and all learning disabilities. It typically does not include mental illnesses, such as sociopathy.

Ableism – Ableism is the belief and act of considering the non-disabled body or person to be superior to all others. It also presents itself when accommodations are not made for disabled people and when people don’t consider disabled people’s needs or opinions. Often influential people or organizations will forget to take into account the very people they are supposed to help.

Biomed¬†– Short for “biomedical,” it’s a group of “doctors” and parents who believe giving certain supplements, vitamins or homeopathic preparations to Autistic people will somehow cure them. While some things, like vitamin B12 supplementation are not particularly dangerous (just a waste of money really), others, like MMS, are poisonous and bleach-based, which have led to the death of some Autistic individuals. There are always people out there willing to make a buck off of scared parents. Just make sure you aren’t harming your child instead of helping them.

GFCF – GFCF stands for Gluten Free, Casein Free. Some people believe eating a GFCF diet resolves some autism symptoms. Others see absolutely no difference.