What the heck could I talk about that would help others in their journey to learn more about autism? I have stories – lots and lots of stories. I have avoided reading too many of the other autism blogs as many of them upset me – they seem so negative, as if autism were a fatal condition and there’s no hope. No hope . . . how can anyone expect to help their child if they feel there’s no hope. Autism is serious – we all agree on that, but that’s where I begin to deviate from the mainstream. Autism makes a child different than their peers. It forces them to use very creative ways to learn and to venture into our world, but they do learn and they do move forward.
Maybe Matt is different than other autistic individuals, but I doubt it. Autism is on a spectrum – varying degrees of severity and symptoms – but I don’t feel others are stranded in their autistic world any more than Matt was. Am I being overly optimistic? Let’s take a look at some of the things that Matt has overcome and you tell me if it sounds as if he had some special gift for advancing from “moderately-severe” to “moderately autistic” to “mildly autistic” to “high-functioning”.
At diagnosis I was told that he was “moderately-severe” autistic. The doctor told me the only reason he didn’t get the “severe” title was because he did not harm himself. He had every one of the other text-book symptoms. The doctors suggested that I put Matt in a “home” because he would be too tough for me to raise in my own home. When I declined their suggestion they warned me that I didn’t know what I was in for – that’s how classically autistic he was. So, you can’t just assume that he must not have been that bad to begin with – he was.
We have had our struggles and our bad days, but the good days out-number them by far. You have heard the saying, “It takes a village” and we met some great people along the way that had a wonderful influence on him – a village load of people. As a parent – to any child, not just an autistic one - it is normal operating procedure to try your best, learn about your child’s needs, and seek out the right path. In comparing a normal child to one who happens to be autistic, the only thing different in your quest are the needs. For me, figuring out what he needed required me to understand what he was going through. It took lots of time, lots of observation, lots of trial and error, and above all else, lots of hope. Many years ago I was asked if I believed in miracles and my reply was, “I see them every day”. I was referring to Matt and the wonderful way each day provided some tiny step forward, some steps so small you would miss them if you weren’t looking.
What were Matt’s Symptoms? You name it he had it. Take a look at the list.
- Avoids eye contact
- Difficulty in understanding facial expressions or body gestures.
- Lack of interest in people.
- Lack of empathy.
- Doesn’t want to be held.
- Anxiety in a crowd
- Delay in, or lack of, speech.
- Difficulty in starting a conversation or continuing a conversation.
- Repetitive use of language - echolalia.
- Difficulty understanding sarcasm or humor in language use.
- Appears not to hear, doesn’t respond to their name.
- Spinning toys or just the wheels on toys.
- Fascination with a particular topic.
- A need for sameness and routines.
- Lack of imaginative play.
- Plays alone.
- Reduced sensitivity to pain
- Hypersensitivity to sound, taste, and sometimes light.
- Body rocking.
- Hand flapping
I believe to this day that the problems in social interaction were based in fear – fear of the unknown. I held him – even when he squirmed. He finally allowed me to hold him and the leaps forward emanated from that point. Social interaction with others is still an area that we work on daily. He has learned the basics for greeting and saying good-bye, and can keep a conversation going for up to 10 minutes – a remarkable feat! When he speaks to you he looks you in the eye. If you smile, he smiles. Matt has an interest in the people he knows and loves. If someone feels bad or is happy – so is Matt. He can be in the middle of a crowd and not show any sign of being uncomfortable – he actually enjoys the adventure of it now.
I was most concerned with his speech because the brain would stop attempting speech around 5 years old. If he didn’t speak by 5 his chances of ever being able to speak would be minimal. I have read that 40% of all autistic children have no speech – that’s scary. We passed through the echolalia stage (about 2 years worth) and as his speech improved, so did his ability to pick up on sarcasm and humor. Now, Matt absolutely loves humor and can pick up on sarcasm if presented as such (not subtle).
Matt spun toys and the wheels of toy trucks, trains, and cars. As he learned new outlets for communication, such as his art, his imagination was apparent and the spinning stopped. Matt still has a fascination for particular topics and likes to be alone, but he also enjoys being with others and has gained an interest in new topics. As for routines – yep, once a week we still go for pizza.
Sensations can still be over the top. His showers are luke-warm and he keeps his room dimly lit. Yet, he now tries new foods – doesn’t eat them, but does taste-test. Loud sounds have to be really loud for him to put his hands to his ears. Pain, unfortunately, is still an unknown. We are always vigilant for signs of pain because we are unsure if he would reveal his pain to us - before it became intense.
As for rocking and hand-flapping? Well, we haven’t seen either for many years now. Those behaviors are a thing of the past.
Remember, Matt is 24 years old. We take each step forward as it comes and they do and will come. I accept Matt for who he is. If he never changed another habit or behavior he would still be the light of my life. When new challenges are met or old ones are overcome, we celebrate in this house – it’s a big deal! All of his progress has been one unexpected joy after another.
So I have decided to be a speaker for autism. I think hope needs to be the main point of any message on the topic of autism and I think Matt is a great example of how a terrible diagnosis does not mean life is over. Yes, he really was very autistic and yes, he is very high functioning now. And the years in between were not all doom and gloom - they were actually quite adventurous.
It’s all in how you look at it. I see the small steps forward and my heart is full of hope.
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