Life After Adult ASD Diagnosis - A Year Later

It has been over a year since my official diagnosis of ASD and SPD, and I feel like I've changed so much.

My journey started with learning and self-acceptance, and moved more towards advocacy.

I'm open and honest about who I am. I am open and honest about my limitations. I try not to boast about my gifts :) I still have a lot to learn.

Being open and proud has helped a lot. Not succumbing to the pressure to "be normal" has taken a huge weight off. Similarly, being able to tell people exactly what I need and how I work has helped for mutual understanding. I can explain when/why I come off the wrong way sometimes.

I think disclosing has been beneficial for me because when I tell others, I am able to get better feedback about how they perceive me. When I understand how I am sometimes giving off the wrong signals, so to speak, I can work to improve on that. Suffice to say, I'm still learning social skills and this awareness has helped.

My picture for the Amazing Autistic Women project

With diagnosis, I joined a club and met so many amazing people so far. I'm still learning and it's pretty cool.

How To Explain Autism to a 5 Year Old

I've seen a lot of talk recently about people debating if and when they should disclose their child's autism diagnosis to them. I am firmly in the disclosure camp, and the sooner the better.

I'll use an analogy to explain why. Let's pretend autism isn't in your brain, but a differently coloured ear that hears differently. Kids don't really notice colour, but they do notice differences. So they see their two ears, but one is blue. No one else in their family has a blue ear and they can see that. This blue ear means they hear things at a different pitch from non-blue ear people. They can still hear just as well, but the pitch is off, which means sometimes sounds get scrambled. They can see other non-blue ear people have entertaining conversations and laughing, but they can't always follow. They start to feel left out. People assume the blue-eared people don't understand, so they simply stop including them. The blue-eared person starts to wonder what is wrong with them. They think they are flawed.
Keep in mind, there is nothing inherently wrong with the blue-eared people, they just hear slightly differently. With time, they can also be taught to hear different pitches differently, or people make an effort to adjust their pitch for the blue-eared people.

Snap back to reality and autism is no longer about blue-eared people, but I hope the above makes some sense. In general, when you don't explain why someone is different and what that means, the conclusion a child will almost always make is that there is something wrong. Children take on a whole lot of different emotions and issues that have nothing to do with them. The same way a child will blame itself for a parent's divorce, they will blame themselves when they have problems understanding or making friends, unless you explicitly clarify things for them. (And even then, they still might, but you can at least try to make sure they don't blame themselves)

Explaining autism to them - both the gifts and the downsides - gives them the language they need to explain it to others. Over time, it will give them the confidence to be able to advocate for themselves. Unfortunately, as much as we would like to, we will not always be there for our children and they will have to face this world without us. They need the tools to be able to have their needs met when you're not able to fight for them.

So how to do explain autism? Well, I use opportunities to slip in little factoids now and then. If we're waiting for the bus and have nothing else to do, I say, "hey, do you know you're Autistic?"
He usually says, "yeah" now. "You know it means your brain works differently from other people's?"
Sometimes I tell him my brain is like his, but not dad's. Sometimes I tell him it's why he struggles with some things, but also has an amazing eye for details.
Then I leave it at that. Because at his age, I don't think he needs tons of details. He just needs to start learning the vocabulary, and to know there's nothing bad or wrong about him, just different.

I think about how I grew up without a diagnosis and how confusing it was for me. I blamed myself for so many things. I don't want him to have that experience. Knowing how his brain works means he can work with it, rather than against it, and he can learn tools or coping skills to be more effective.

Explaining autism (or Down's, or SPD, or Apraxia) is not a one-time thing. It's an on-going dialogue based on acceptance and trust.

How I Knew Something Wasn't Right

I pretty much started this blog after the Little Man got his autism diagnosis. Not to say everything was peachy before then, but I wasn't chronicling our experience at the time. Every now and then people ask me, "what were the signs? How did you know?"

Honestly, I didn't know. We knew something was very different about our son, but not what exactly. Actually, because doctors were giving us a hard time, we thought there might be something wrong with us!

First off, I speak from a position of great privilege - I have a degree in Linguistics. Because of my degree, I studied language acquisition and childhood development. I studied the brain and learning disabilities. I then volunteered with Deaf children and learned speech therapy techniques. So I had some experience working with non-verbal children and what "normal" development should be like.

From the beginning, my son was not "normal." As a newborn, he was very alert, like a wise old soul. This was when he was quiet, but otherwise he was screaming. When quiet, he stared at lights and didn't look at us much. We called his name and he did not respond. We actually thought he may be deaf, so we had his hearing tested. It was fine.

His head grew very large, very quickly (a sign of autism for some), so we had that monitored. He seemed to space out now and then, so we had him tested for epilepsy. Nothing there.
He made a few noises, but didn't babble. He drooled a lot and flapped when excited.

For me though, the biggest red flag was the lack of speech. Because of what I learned about speech therapy, I was using elicitation techniques with him from birth. He never imitated us. We did baby sign, which he responded to pretty well. We could tell he understood us, but wasn't reciprocating.

He sat quietly and spun the wheels of his trains. He got down on the floor to look at the wheels move. He flicked his fingers in front of his eyes. When we took him to the park, all he did was sit in the sand and run the sand through his fingers and squeal loudly. We couldn't put him on the slide. If I stuck him in the swing, he sat passively, as if waiting for it to be over.

Aside from not speaking, he couldn't eat food. He was constantly putting stuff in his mouth, but not food. He would choke and gag on the baby food. Or he would shove a whole bunch of something in his mouth and hold it there. (That's more SPD and Apraxia than autism)

So I took him to a bunch of doctors with these issues and was spoken to like I was crazy, like I was doing something wrong to cause these things. What parent doesn't want their kid to eat? All he would eat were crunchy things that would melt in his mouth so he could swallow them whole without chewing.

It wasn't til he was over two and a half that he got diagnosed as autistic. It wasn't until he was over three that we got the Apraxia diagnosis. Not for lack of trying!

I wish doctors understood the power of a mother's intuition. No one wants there to be something wrong with their kid. We all want our kid's lives to be easy.  I wish simple things did not have to be a struggle for him. That doesn't mean I don't accept him as he is, where he is right now. If his path could be easier, I would welcome it. I think any parent can relate to that. I wish doctors did also. When a parent comes with concerns, they need to be taken seriously. I know my child best. You know yours. If you are concerned about your child, keep fighting, keep searching until someone hears you. 

How My ASD Diagnosis Changed Me

It has been just over six months since I got my official ASD diagnosis. It feels longer for some reason, but not in a bad way. It's amazing how much I've changed in the last six months.

I have embraced my diagnosis with open arms, using it as a catalyst for self-discovery and new levels of self-awareness. Mostly, I have felt empowered by it. I feel authentic. I no longer feel ashamed of myself and because of that, I feel I can live more like my true self. I am allowing myself to be me, just the way I am, without negative judgment. And that is so freeing.

I know a lot of people say they feel like diagnosis makes them "act more autistic." I guess I can say a similar thing, in the sense that I am allowing myself to be naturally, quirky me. I no longer try to hide my stims. I accept them as needed and helpful, for the most part.

I "came out" at work, which has been both good and bad. Good because it has given me a way to fight for acceptance and bad in the sense there is still a lack of understanding of what it really means to be Autistic. However, I guess I can't accomplish everything in six short months. Still, there is hope for improvements and I don't regret doing it.

I have felt more empowered to stand up for myself and my family. I would have said I was always a strong person, but truthfully, I lacked certain skills when it came to dealing with my mom. I came to the realization that I was still doing things simply to "keep the peace" or make her happy at the expense of myself and my family. I finally found the courage to put my foot down. Case in point, normally I would have gone to her place for Easter dinner, not because that's what I want, but because it would be what *she* wants and I would suffer through it. She is just a very negative and controlling person and being around her makes me anxious a lot of the time. I refused to go, which of course made her angry, but she'll get over it. Instead of turning my life into chaos and bending over backwards to make it work for her, I've had a very relaxing weekend with my little family at home. That peace of mind is priceless.

I have become better able to let anxiety and other stressful emotions wash over me, rather than panic. I think understanding that my anxiety stemmed mostly from over-stimulation of the senses and learning to listen to and accept my limits, means that I am a much happier and calmer person. Before I didn't really understand what I was panicking about, which can be pretty scary. Now I am more aware of my sensory issues and finding ways to work with them. I accept that I can take time-outs for myself and I can find ways to recharge and cope. I no longer blame myself for what I previously perceived to be "failings" or "weakness."

On this day, which also happens to be my 13th handfasting anniversary, I think back to the vows we wrote for each other. One line was, "to delight in who you are becoming." We knew over time we would both change and we decided to accept that off the bat. I know my husband still delights in what I am becoming and I delight in his changes as well. But I can also say that I am also taking great delight in who I am becoming.

As I sit perched in my new hanging chair - which my husband worked hard to mount for me, knowing it would calm my sensory issues - I can't help but delight in the whole process of becoming more me. 

Canadian Healthcare

I thought I'd give a little overview of our healthcare system and experience, since many of my readers are not Canadian. Also, even if you are Canadian, there are a lot of differences between provinces.
While we do have Health Canada and there are certain standards all provinces as supposed to comply with, healthcare falls under provincial jurisdiction. In other words, each province pretty much does their own thing and if you were to compare the services between them, it might look like we're all in different countries.

For example, when people quote our maternity and parental leave benefits, they often quote Quebec's allowance, which is the highest in Canada. While QC actually has a law saying a woman is not allowed to return to work before six weeks post-partum without a doctor's note, in Ontario, you can get up and head back to work right after labour if you want to.

On the downside, our seasonal flu shots are only (technically) free to those considered part of the vulnerable population (under 23 months or 65 and older or immunocompromised, or in contact with any of those people). I say technically because while I've always just walked in and gotten it when I wanted it, no questions asked, it's not always that way - it seems to depend on the nurse's mood that day. If they wanted to charge me (and they could!) it would also not be covered by my private insurance, so if I didn't have the money, I would have a problem.

So if you want to get an idea of Canadian healthcare, you need to ask a person from each province and territory to go over the good, bad and ugly bits. Ask anyone who has lived in more than one province and how confusing it can be. Or take for instance, the fact that PEI doesn't have even ONE abortion provider. That's not right.

I'm going to concentrate on QC, because that's where I live, so it's what I know best.

Basic healthcare in QC is free. So if I want to see a doctor every day of the week for any reason whatsoever, I can walk into any clinic or hospital, show my card and see one.
Then the system forces every single employer to provide a private insurance policy for prescription medications and other sundry things like life insurance. The plans are all pretty much the same, and cost somewhere around $80 a month at most to cover a family. Some workplaces cover that cost, making it free (yay!) but I don't think that's too common. The plan usually covers 80% of the cost of your prescription medications and things like massage, OT, speech therapy, naturopathy, acupuncture, psychological counseling and those sorts of services. They also cover eye exams and dental appointments. You are allowed to be covered by more than one plan, so for example, my husband and I are both employed, so we both have our own policies. We claim our 80% on our own first, then the 20% that is left is covered by the spouses' plan, making everything FREE! The Little Man is covered under both of us, so we claim on both our plans and all his stuff is free. Dental care for children is free up until a certain age (have to look it up).

So starting from the beginning of Little Man's life, my pregnancy was followed part public and part private. Blood work and check ups were all public. Scans and specialists were private. It didn't have to be that way, but it's what I chose for myself. I preferred the specialists at the private clinics.
I gave birth at a hospital (public) and my delivery and two-night stay in a private room was free. After being sent home, about five days later a nurse came to check on us at home to make sure we were ok.

All his vaccinations were free. Before vaccinations, a nurse does a quick check up of mom and baby. They check weight, ask about how you're coping, answer any concerns you may have.

Fast forward to when things started to get complicated - I brought up my suspicions that something was wrong with the Little Man's pediatrician. I switched doctors three times because they were blaming me for his issues initially and not listening to me. He was sent for a hearing test (private, so $$), and an allergy test (public, so free). Eventually someone listened to me and we were referred to OT. OT was free through the local children's hospital. There we also had an assessment by a physiotherapist and a psychologist. I wasn't satisfied with just that, so I took him to a private psychologist, who finally assessed him for autism. If I hadn't gone private for that, we'd still be waiting for a diagnosis. Last I heard, the waiting list for public-system autism diagnosis is 3 years long. Ain't nobody got time for that.
I should note that even though insurance covers us, it covers to a max of $500 per service annually. So that's only $500 of psychological testing/services, $500 of (private) OT or speech therapy etc. If you know anything about the hourly rates of these things, you know that doesn't cover much. And even if you double our maxes to $1000, that still may not cover everything you need.

Obviously, when it comes to certain things, it's because we were privileged enough to afford private testing that we got our services quickly. That is not the case for everyone in this province though and that's a big problem.

After finally having a diagnosis in hand, then there's the waiting list for public services. QC provides free ABA therapy for any autistic child for 20 hours a week, up until the age of 6. Or at least that's what they say they provide or would like to provide. Does that actually happen? Probably not as much as one would expect. Also, ABA wasn't exactly on our top choices of things we wanted to subject our child to, but we put him on the waiting list in our area anyway. We received a letter over a year later telling us we would probably get services in the next two years. So, he would be six by then, which would have been useless anyway.

However, things can also be different by borough, because the city is divided up into boroughs and each borough has it's own health services. When we moved to a different borough, our file transferred and suddenly the waiting list became shorter. It also offered more services. Honestly, I'm happy we moved to a richer borough because the differences are so stark.

Now we get a special educator who comes to the house to help us with the Little Man, about an hour every three weeks or so. She pretty much just acts as an assistant to us. She gives us pointers on things, and she makes our picto boards and social story books for us. She has really helped us be better parents, by giving us different strategies. Pretty much whatever we ask her to do, she does the grunt work for us. We just send her what words/pics we want and she does all the printing, plastification and velcro work. This might not sound like much, but it helps us a lot.

One other detail, with official diagnosis, you are assigned a social worker. Well, kinda. You see a social worker, then you're on a list for a dedicated one. We had one, but she went on mat leave and we moved, so we no longer have one. Kinda annoying. What comes out of the meeting with the social worker is down to luck - if they're not knowledgeable about grants and services specific to autism (and a lot aren't, or not in English, since French is predominant here) you will miss out on certain things. Again, the experiences of different parents I have spoken to have been so vastly different (and that's within the same city!), it's absolutely ridiculous. However, I can't really complain about my experience. We receive two subsidies for the Little Man and that is through the work of the social worker helping us fill out applications. From speaking with other parents, social workers here spend an awful amount of time trying to get us to talk about our marriage/relationship to make sure everyone is ok, but I really don't care to speak to a social worker about those things. If I need relationship help, I'll see a psychologist. I use our social worker solely for access to services/funding. However, I do see the value in family support and counseling, so if we didn't have money for a psychologist, at least some part of mental health would be looked after.
And this is an important point, because I know if I were depressed or overwhelmed, I would be taken care of promptly and for free.

So there is what I had hoped would be a short overview of our experience with our public health system. If you have questions or want more detail, feel free to ask! 

Autism vs Asperger's

If you hang around here a lot, you'll know I refer to myself as Autistic (with a capital A) and not Asperger's. There are a couple of reason's for this:

One, despite how I may appear and how much I can relate to Aspies, my diagnosis is autistic.

Two, the Asperger's diagnosis got swallowed up under ASD and I think we all might as well get used to just saying ASD.

Finally, there are some Aspie's with superiority complexes and I'm not interested in being in their club.

Yes, I do frequent a lot of Asperger's groups/communities, mostly because I "get" them and I think they "get" me. In fact, I've never really felt quite as home anywhere else and they are the closest to it. But I'm technically not an Aspie.

I jokingly refer to myself as Aspie at times for simplification, but that's about it.



If you have a diagnosis of Asperger's, are you hanging onto the title?

Autistic At Work

You may also be interested in my post about Autistic people finding jobs and my first post about coming out at work.

It's been a month and a half since I came out at work, so I thought I would update.

I pretty much just drop subtle hints here and there. I have put up the "no puzzle piece" logo on my desk, as well as a pin that says, "I love my Autistic brain."

One of my teammates confided he believes he might also be Autistic. (Autism must be contagious)

I have a great work environment that is most interested in using people's natural talents, rather than trying to force us into molds. While I do have to learn certain things for my job, the tasks I am given are based on my strengths. I also have a boss who freely gives praise where its due. This really helps me.

He also praises me for accomplishing things he now knows are harder for me than other people. At the same time, he tells me where I've done less than optimal things and shows me how to correct them (usually communication with other departments). In other words, he's slowly teaching me social skills. In general, he takes care of the social aspect for the team, but he's also teaching us to be able to fend for ourselves.

In general, I believe I owe a lot to just being in a great environment. I don't have any regrets disclosing my diagnosis. I simply feel freer to just be myself.


You might also be interested in reading, Asperger's on the Job (Canada) or Asperger's on the Job (US version). This book helped me make the decision to come out at work with confidence and I lent a copy to my boss to read. 

Delivering the Diagnosis News to Daycare

The Little Man has been in full time daycare for almost 6 months now, but even though we had the autism diagnosis before then, we chose not to disclose that info to our daycare educator. It was a choice we didn't take lightly and we decided it was better that she wasn't biased. He is easy-going enough and we figured she would eventually figure it out for herself that he was a little different.

Well, it didn't take long for her to notice his peculiarities, but she was flexible enough to work with him and not against him. She figured out quickly what kind of discipline works and what doesn't, and she is super patient. Sometimes, not knowing you are dealing with a special need's child produces far more creative and efficient results than knowing and giving up. I mean no disrespect when I speak of people giving up - but the fact is, a lot of people (not the parents usually, but others) give up trying to work with a special need's child and don't set the bar very high because they think the child doesn't have potential. If you go in with the attitude that every child has equal potential, you will usually try harder to help each child achieve their best. 

That feeling you get when you hear the news the very first time.

Last night, I made an appointment with her to chat about the Little Man and finally come clean about his diagnoses. My only regret about this conversation was the way I delivered the news. It doesn't faze me any more to say my child is autistic and apraxic, but I forgot about the feeling you get when you hear the news for the very first time. She cares about him deeply and she got tears in her eyes. I told her a therapist would probably be coming into her home to help him and she said she would do anything to help him. We spoke about the best time of day for him and the number of hours needed. We totally agreed and I am confident despite having only worked with him for 6 months, she knows him very well and loves him like her own. We know we totally lucked out with this daycare worker. She truly is a blessing to our family.