More things Parents of autistic children should know
Written on 14th Feb 2018 by Alex Lowery
Sorry I haven’t blogged in a while. I was off sick due to stress and anxiety for a couple of months. I’m back now and my plan for today is actually to respond to 5 of the comments from an article I wrote for the Mighty back in 2015. The article was about ‘5 things I wanted autism Parents to know’. I’d recommend reading that article before you read this because it’ll make more sense. You can view the link here. As a whole, I received rather positive comments and feedback concerning the article. People said I helped give them hope and a variety of other very kind comments. However, when it was shared again on Yahoo (link here), I did receive a number of more negative comments from people who disagreed with what I said which of course is absolutely fine. I’m actually thankful to them for being honest. It made me think more about how I worded some of the points I made.
What I would like to do is respond to these comments and actually clarify exactly what I meant and add more contexts. It is also important to remember that I did write the article nearly 3 years ago, so I would likely word some of the points a little differently now. I know that most of the people who posted those comments will have forgotten about the article and are unlikely to read these responses. But the article is still online and more people will likely continue to read it. New readers may well have similar feelings towards it. What I will try to do is give credit to the comments when it is due, so if I feel like (looking back) I may have given the wrong impression, I will try to point this out. The parts written in italics are the comments I received from people & the parts in bold are my responses to them. Enjoy!
- “Having worked with people with autism and ASD for over 25 years, I would have to say this article is simply not true. Like anything else there is a great deal of degrees of functionality, some will go on to live pretty much normal lives with a few hiccups on the road. Others depending on the severity will always have issues and be dysfunctional. The saying “if you met one person with autism, you have met one person with autism” is so true, there is no set behavior and outcome.”
This comment is true. Autism does cover a very wide spectrum and they can’t all be fit into a tiny box. Despite the impression one might get though, as a child: I honestly was quite severely affected. I had the speech delay and the developmental delays you’d typically find in Classic autism. I’m certainly not in the bracket of someone on the much higher end whose overall development was normal but just had social deficits. I really was quite a Classic case as a young child, and my Parents were told not to expect too much. Now: of course there are certainly still severely autistic people (particularly those who have a co-occurring intellectual disability as well like I said in the article) who will make very little progress no matter how much hard work has gone into it. But I was mostly just speaking from my own personal experience along with what I’ve heard from others. The point I was making wasn’t “All autistic people will succeed if their Parents push them forward”. That of course would be unrealistic. There are many things even I haven’t achieved yet. My point was that if enough effort is put in, you might find progress is made. Of course what that progress is will vary from person to person. You may find a severely autistic person who couldn’t feed himself by ten, but can by 15. This might only seem like a minor thing, but it’s still progress for the individual. I’m by the no means saying: that’s the only progress one should hope for, but I’m saying progress can often be made even if it’s only small compared to most. When I was 16/17, I knew an autistic man in his early twenties who didn’t dress himself, but within weeks of being taught: (even after over 20 years of not doing it) he could do it. He may never be able to leave the house unaccompanied, but it’s still an achievement for him. The point of the article is to aim for as much progress as possible.
2. “The comment about reaching “their potential by 16 or so” caught my attention because why would that be so for those on the autism spectrum? It isn’t so for others who plan to go on to college, trade school, jobs….. We keep on learning until we die as far as I can tell. How many older people have followed computers and other new technology? Let’s not limit where the upper age is for learning. We have different ways and speeds but we need to keep it going and to encourage each other.”
There was a part in the article were I said, “A lot of people think that those with autism will have reached their potential by the time they’re 16 or so. This is incorrect.” The comment above is in response to that part, and I have to say that I actually do agree with the comment 100%! It’s completely unreasonable to expect someone to stop making progress just because they’ve reached the age of 16. Neurotypicals at 16 still have a lot to learn, so why wouldn’t it be expected of those with autism? Well, the truth is I honestly don’t know. I’ve actually asked this question myself so many times since I wrote that article and it does baffle me that anyone could think it would be the case. But for some reason (apparently) some people do think that once an autistic person gets to a certain age they don’t tend to continue to progress. It could be because a lot of people with intellectual disabilities don’t seem to learn as much after a certain point. Personally, I’m not sure I even buy that in all caeses though. Surely anyone (by anyone, I mean ‘anyone within reason’) can still learn things as long as they’ve got a long life ahead of them. This is definitely one big myth that should be busted!
3. “As the parent of a 19 year old with severe autism, I am highly skeptical of this article. It does a disservice to the legions of people taking care of those with ‘typical’ autism, often nonverbal with flapping, stimming and other behaviors that others would be aghast at.
Our child has the mental and functioning level of a three year old. Most of the surge in functionality happened when our child was about 12. It has been stagnant since then.
Don’t peddle false hope to those who desperately seek it.
Maybe one in a thousand is as highly functioning as the young man in this article. Furthermore, I question the validity of his diagnosis.”
I can definitely see where this person is coming from and looking back at the article: I probably should have been more careful not to give Parents too much false hope of achievements that might never happen. I did try to point out in the article when I said that there are Profoundly autistic people who likely will require 24-hour care for the rest of their lives. Also, since this person mentioned ‘Stimming’ in the category of one being non verbal… One thing I really want to point out here is that I do Stim. In fact, I’m one of the most extreme Stimmers with autism I know. I even know non-verbal autistics that aren’t as extreme with Stimming as I am. I also know that the statistics brought up by this person of “maybe one in a thousand is as highly functioning as the young man in this article” are incorrect. The higher functioning end of the spectrum is quite a high statistic. I am probably (give or take) around the middle part of the spectrum (even though autism is far too complex to simply place yourself somewhere on the scale). I do know that as a child, there wasn’t a very high hope for me but this was proven wrong and it is proven wrong with many other autistic people time and time again. But I still do understand this person’s point of view, and it has to be acknowledged that there are autistic people who don’t progress as much.
4. “Anyone that can read, write, hold a conversation, a job and can support themselves, is not autistic.
Especially when the person who can’t read, write, speak, throws tantrums when the slightest things changes, and can be violent is also considered autistic.
Catching an awful lot of fish with this huge net…”
This comment is definitely from someone with a very stereotypical view of autism. With all due respect, everything he said in that comment was false. The diagnostic criteria for autism has nothing to do with ‘an inability to read or write’. There are even non-verbal autistic people (meaning they can’t talk) who are able to read and write. As was said earlier, autism covers a very wide spectrum. Autism doesn’t always mean you can’t hold down a job or support yourself either. Granted, the person who commented this also seemed to assume I was able to support myself when I never actually said I was. In fact, despite the progress I’ve made… I am still rather dependent on my Parents in my day-to-day life, but even now I’m hoping for further progress.
5. “A great point is to remember that it is a broad spectrum.
There is high functioning autism, functioning autism, severe autism,..so many different levels of autism that you can not put the definition into one category.
And even though the author of the article mentions that there are those who will need care for the rest of their lives, it just does not address the issues what the parents have to go through to care for these children.”
I’m not going to lie… I feel like this person may have a point here. Of course I’m fully aware of the spectrum and my intentions when writing the article definitely weren’t intended to give Parents false hope, or to lead people to believe that ‘every single autistic person on planet earth will succeed in life if given the write support’. It’s possible I lack the theory of mind to really put myself in the shoes of these parents. Like I said earlier, my point was merely to point out that I believe one should strive for the best success they can. One shouldn’t give up on teaching. Also, like I said before… As a young child; I was on the more severe end of the spectrum. Now, I may not have been ‘Profoundly autistic’ since I did have some use of speech through echolalia. I also wasn’t intellectually delayed across the board. However, I was still classically autistic and I’m pretty sure that if I hadn’t had all the support to learn new skills I wouldn’t have made as much progress. But I do understand that not all autistic people would make as much progress as I have. There are likely some that would make even more progress than me. In the end, autism is very individual, which is why it’s considered a spectrum. The article I wrote nearly 3 years ago was from my own personal experience and was full of guidelines and not set in stone facts or rules.
Well, thank you all for reading. I hope this gave you an insight into some of my thoughts.
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