An article I was interviewed for a long time ago, made it into The Guardian today. There are some things about it I don’t like. The headline for example ‘its a way of life’. Really? No its not. There is no choice involved. I also don’t agree with Gareth and Amy’s direction very much. Which is why I don’t post on AFF any more. I agree with Simon Baron-Cohen – difference *and* disability.
However, there was plenty to be glad about in this article. It was predominantly written from the point of view of autistic people themselves with cameo’s from myself, Mike Stanton and Simon Baron-Cohen. This is as it should be.
I talked about how, despite the challenges we face with Meg – and we do – we would not want to cure her should a cure ever be developed. What we wish to do is help her to grow to a point where she can make such a choice herself. And make no mistake, if a cure was ever developed and if Meg wanted it, I would ensure she got it. She is first and foremost my daughter and in the same way I do not want to assume she wants a cure I do not want to ever assume that she might _not_ at some point. My own personal beliefs are entirely secondary to what my kids want. Kids first, advocacy second.
And so, I think its appropriate, should you be interested, to talk a little about Megan. Something I used to do all the time on this blog and something I hardly ever do any more. Its not because I don’t want to, believe me.
Meg has started to blossom in a way we had sort of stopped hoping for: last week, Meg came over to me, looked me in the eye and said ‘drink’. Wow. A word not used in a parrot-fashion ecolalic way but in a directive way. Heart-thumping, outwardly cool (heh) I went to the kitchen and asked casually (voice travelling several octaves) ‘what do you fancy Meg?’ (possibilities: milk, water, Ribena, fresh orange). She wandered over to the Ribena and pointed to it: ‘that’. I nearly fell over.
As most of you know, talking is not always the done thing amongst our autistic ankle-biters. However, _pointing to something_ is considered gauche in the extreme. In the space of five minutes, Meg had said two words and pointed. This was more than in the previous 12 months.
Since then, her new found interest in words and pointing to objects of desire has not abated. It has in fact extended itself to reading and revealing the true sponge-like nature of her intelligence and learning ability. We went outside on Sunday so the girls could stare at the rare appearance of the strange yellow ball in the sky (like the rest of the country, they’ve come to associate ‘summer’ with ‘rain’). Meg looked nonchalantly over my head, pointed upwards and said’ moon’. Ready to say ‘no chuck, that’s the sun/a squirrel/some morris dancers’ I turned around and sure enough, there was a day-moon. Translucent, barely there and certainly looking nothing like a child’s typical view of the moon.
Since then, Meg brings books over to us, points out things in them and says the words, the letters, the numbers, the colours, the shapes. We reckon she’s got a hitherto totally unsuspected vocabulary of about 60 words.
So what does it mean? Who knows. We are well aware based on past experience that this sudden desire to speak could recede as quickly as it appeared but its enough to know its there. What happened to trigger it? Who knows. Not me. Meg triggered it. She wanted to speak and point so she spoke and pointed.
Pretty cool though.
Left Brain Right Brain 
“Meg has started to blossom in a way we had sort of stopped hoping for: last week, Meg came over to me, looked me in the eye and said ‘drink’. Wow. A word not used in a parrot-fashion ecolalic way but in a directive way. Heart-thumping, outwardly cool (heh) I went to the kitchen and asked casually (voice travelling several octaves) ‘what do you fancy Meg?’ (possibilities: milk, water, Ribena, fresh orange). She wandered over to the Ribena and pointed to it: ‘that’. I nearly fell over.”
“Pretty cool though.” Yeah Kevin pretty cool.
When you speak of challenge we find it in the unlikeliest of places. We expect stereotyping and discrimination from the ignorant public, we also sadly find it here. A guy who calls himself Timelord on AFF, had this to say about LFA’s
“Why do you think she was booted from AFF – aside from being a SELF CONFESSED LFA! (who BTW are INHERENTLY not intelligent – unlike HFA and Aspergers!” I didn’t like it neither did my girlfriend (a mum of a LFA child. His response “Oh and on LFA – I was stating a fact about the condition of Low Functioning Autism. Nothing more and nothing less. If you or Wilky want to personalise it that’s your problem.”
Well it is a problem. A problem for us all I guess. Division again from within our ranks thanks to Timelord.
Hooray for Meg! Thanks for sharing this story.
It must be those lazy days of summer that I wrote about, eh? Adam is doing the same. As I wrote, it is very exciting — at any age — simply exciting.
Hooray for Meg! I hope the advances continue, for her sake. It has to be frustrating not being able to tell your mom and dad what you want. (I know it will be easier for you and the rest of the family too, but I wanted to focus on Meg)
Wow Kev,
I am so pleased for you all. I think that sometimes autistic kids need to feel really secure within themselves and with their environment in order to take the sort of steps you describe. So you must all be doing something right.
Lovely! This is the real news.
That’s great progress. Meg’s definitely lucky to have accepting parents.
Thank you for deciding to write about Meg a little. Truly great to read.
Yay Megan 🙂
Thanks for telling us about Meg and we really do share you joy. I know that feeling all too well. I hadn’t even noticed that the boys didn’t ‘point’ or if I did, I didn’t understand what it meant not to. I also share your trepidation about celebrating too soon. So often for us, we have some major break through and then it’s never repeated. There again, sometimes it pops back again when you least expect it.
Best wishes to all of you and yours.
You got that right Kev! It is pretty cool about Megan. I’m so very pleased for your family. I miss her stories from years ago, sometimes I regret never asking for a private access but always wished her well.
So what does it mean? It simply means you rise to the occasion, go forth and enjoy— do the jig!?! Cheers and kind regards from natterandramblings.
Thanks Kev. I enjoyed this very much and appreciate the obvious respect you have for Meg.
I’m so pleased that you are happy, Kev, and that Meg is confident enough to communicate what is really inside her. May you have more of the same, and if not, may you celebrate what you have had. Never doubt the capacity of your child!
Are you sure you’re not chelating her on the sly? 😉
I’m happy for you all, Kev. Has Tabitha noticed much? She’ll be very excited to see a new side of Meg, I’m sure. She’ll also be the least surprised in the family, I suspect 🙂
Go Megan!
Tuula was a little like this as an infant. Not a lot of words used but her receptive vocabulary was probably quite large since she understood both her mum and myself (speaking to her, as we did, in Finnish and English respectively). It’s surprising how, once a kid gets the hang of using language in a spoken form, they just go with it.
Seems like Megan, like Tuula, had a good environment in which to feel comfortable making these advances. Well done.
Very uplifting news and thanks for sharing. Ever since I saw your “Beautiful Autism” video on YouTube, I’ve been wondering how she’s getting on. Time and readiness can do wonders, in addition to all the other input. I understand your apprehension about false dawns but now that Megan’s started to point and use words, she’ll go on. Progress might be uneven but she will progress, after all, even NT children have fits and starts. May I predict that ere long, the floodgates will open and you’ll find yourself thinking/saying “I wish she’d shut up”? All the best.
Go Meg!! 🙂
Thank you all :o) – isles – definitely no chelation although we did use some sun lotion recently. I hear they’re similar ;o)
Our philosophical position on Meg talking remains the same as it was before: she might, she might not. Whatever :o) – I just love these insights into her progression that reports and Statements and IEP’s can never offer.
Ross, I’m very sorry and unhappy to hear Phil talking in that way. I would not’ve expected that sentiment of him.
Aileen, I have to be honest, we rarely update Meg’s personal blog anymore – too many blogs!
Steve – we suspect that Tabby may be some kind of catalyst. She’s like an ubertherapist in that she refuses to take ‘no’ for an answer from Meg. We have to gently discourage her from being in Meg’s face _all_ the time but she idolises Meg and follows her around doing whatever she does so I think reciprocity has kicked in a little and Meg has started to notice what Tabby does and respond in kind.
And she’s sleeping a little better as well so that has to help her equilibrium.
Again, thanks to all for the good wishes for Meg.
Thanks for posting this about Megan, Kevin.
My HFA son Connor has been a responsible for much joy and delight for me. I guess because of developmental delays every milestone or achievement was and will continue to be overawing. Both in excitement and pride. It it funny how we constantly concern ourself if we are doing the right thing by our children and then moments like the above which may otherwise seem insignificant, take monumental importance in our life.
My little boy never seemed to be bothered with or interested in any profession and so at my birthday at a bowling rink a couple of years ago he (then aged 8) suddenly asked “You know what I want to be when I grow up?” I was dumbfounded. “No” I answered. Very thoughtfully and seriously he replied, “I want to be just like you”. I burst into tears.
I subscribe to you feed Kev and read everything you post here with interest. You seem to have been quite animated – angry even – far too much recently and it’s just fantastic to read something like this.
I’m sure you’ll have many more happy moments like this. Thanks for sharing ;¬)
Truly a heartwarming story. I can only imagine the joy that you must be feeling. I wish Megan, you and your entire family all the best.
Great story, Kev. A smile is a very underrated thing.
Mike, your direction, helping Meg grow to the point where she can make her own choices regarding treatment/cure, etc. is something that we did with our sun who has CP. When he was 16 we went to a specialist orthopedic surgeon who deals with disabilities such as his. He offered several surgical procedures, with no sure fire improvement in fucntion guaranteed. We discussed everything with our son, and he said he did not want to go through it. Having had several surgeries when he was younger, we knew the prblems, etc, and we respected that.
Recently, we heard him bragging to a friend that his parents respect him to allow hom to make choices.
You CANNOT beat that.
Way cool! That’s really all I have to say. 🙂
This has got to be the best post I’ve read here so far 🙂
“Pretty cool though” – I believe that’s exactly how I felt when Alex, at 6+, began to talk. Like Meg he had a stash of words ready to use. He had also been reading, to himself up until then, and as soon as he began to talk was able to read aloud everything he had been reading to himself up to that point. The responses here remind me of the reaction of Alex’s teachers and everyone else who knew him at the time but to me it was just “pretty cool”….. And he’s done lots more pretty cool things since then, you have so much fun ahead 🙂
Remind me again Kev, how old is Meg now?
Oh and Estee – don’t think it was the heat and/or sunscreen here – Alex started talking in February. (In fact, it was a little classmate named Ashley…..)
“Steve – we suspect that Tabby may be some kind of catalyst. She’s like an ubertherapist in that she refuses to take ‘no’ for an answer from Meg. We have to gently discourage her from being in Meg’s face all the time but she idolises Meg and follows her around doing whatever she does so I think reciprocity has kicked in a little and Meg has started to notice what Tabby does and respond in kind.”
Ditto with Tyler and Jason. Tyler is very rambunctious and high-energy, and tends to “pull” Jason into activities like chasing around the house or throwing things around the yard that Jason would not independently engage in. Also, Tyler is very verbal and precocious, and I think Jason tries to respnd in kind. I have little doubt this helped his speech development. Tyler is still too young to realize or care that his brother is neurologically different than he, and it is refreshing to see someone interact with Jason who has absolutely no preconceptions whatsoever other than Jason is “supposed” to play with him and be a brother.
Just stumbled onto this blog today, and this is the first post of yours that I have ever read, but having a non-verbal six year old of my own, these are the kinds of stories that I virtually live for. Yours makes me misty, and I can only imagine your trip into the kitchen as though it were my own, with my little one trailing behind me, pointing out his preference.
And I do very much like your take on allowing her to make her own decision on a cure, if ever there is one. Kids first, advocacy second.
*points at Kev*
nice post and cheers to Meg
I know my NT kid learned lots of stuff from my ASD kid, so it goes both ways. 🙂
It’s obvious that certain other children can have a fantastic “therapeutic” effect on autistic kids. (jypsy’s son Alex’s experience was fantastic) But it can’t be bottled and sold, so it’s not packaged as part of “best practices” from what I’ve seen. Putting an autistic child in a classroom full of kids is not the best way to go, not if the autistic kid can’t cope with sudden movements, or the racket typical of classrooms. Maybe some autistic kids don’t mind it, but I don’t think it should be assumed that they can deal with it.
It would be great to match up nice friendly kids with autistic kids to take advantage of those relationships, but the ABA therapists wouldn’t go for it unless they could continue to be paid at the rate they are now while they sat on the sidelines and let the kids learn from each other without interferance. My point is, there are things in life that can’t be packaged as “therapy” and sold, and many “therapists” can scarcely cope with that fact.
Not everyone can or want’s to have another child (some who aren’t planning on another have one anyway) and no one should count on that child’s personality being a good match for the autistic kid. That seems kind of obvious to me, but there was an autism magazine (Spectrum, I think) that actually had an article suggesting parents of autistic kids go out and adopt a typical kid. I think the idea was that genes being what they are, the parents were afraid to have another autistic kid. I told the author that that was surely one of the most cold blooded suggestions I had ever come across. As if the adopted child wouldn’t figure out that his main purpose in life was to improve the life of the couple’s autistic child. It just struck me as kind of sick. Not that people should never adopt a child, but good grief, not to get a free therapist or a sibling to care for the autistic child when the parents die.
I wouldn’t be surprised if autistic kids were more common among adopted kids anyway, if the parents adopted a baby, that one could be autistic too, and the parents wouldn’t know it until later.
Wow wow wow wow! I’m blown away, Kev. And delighted. And terribly pleased to see you posting about Megan. All the best to you!
Kevin, this is wonderful news! I’m very happy for you and Megan. My daughters are twins and I think that they help each other in many ways. I think that they have helped each other develop social interest in other children by discovering, through each other, that playing can be fun! On the other hand, they do tend to reinforce each other’s sometimes rigid and idiosynchratic play styles and language patterns, but on balance, I think it’s a good thing.
I’ve never considered adopting a child for therapeutic purposes, Diva – yikes!
That’s great news about Meg, Kev. Very cool!
Super news Kevin. Thanks for sharing what’s up with Megan…I missed hearing about her.
Thanks again to everyone who commented after my last thanks…(if you get me)…especially nice to see H and the Ruttmeister commenting.
Its a tricky proposition writing about Meg. There are, as I’m sure you all know, people who have chosen to try and make their point by making fun of Meg. I find it very difficult to choose to write publicly knowing that. However, if I don’t – then they win.
I can’t find the article online, but it’s mentioned here
http://findarticles.com/p/articles/mi_pwwi/is_200408/ai_n8556516
“Adoption Option: Parents that want to grow their families but are
concerned about the genetic risks of having another developmentally
disabled child turn to adoption (case study of Long Island families)”
The article wasn’t just about “growing” families it was about adopting a child for the purpose of doing something for the autistic child.
Who are these idiots who make fun of Megan? Please don’t let disreputable people with an axe to grind prevent you from telling other interested and supportive parents about your daughter’s progress. Your post has brought back memories for some, given hope to others and insight to the rest. We’re all cheering for Megan and willing her to go from strength to strength. I’m convinced that she can read quite well and has a much larger vocabulary than 60 words. You bet her little sister will draw them out.
On a personal note, I’d like to let you know that your video of Megan on the trampoline inspired my 12-year old aspie son so much that he wants to start his own blog to tell his story in his own words. He has trouble showing his emotions but I could see that he was moved by the look on Megan’s face as she finally faced the camera and he read out the final words of the video in total bemusement. In fact, he who does not willingly speak English in my presence (we live in continental Europe) asked me “Mom, what’s a train wreck?” He was deeply offended on his and Megan’s behalf when I explained it to him. I’m a wee bit reticent about him setting up a blog though because ever since he got the “gift of tongues” at 41/2 years, his pronouncements usually leave me feeling pleased, astonished, amused, awed and very embarrassed all at once.
Write on for Megan. Cheers to you and your family.
Just catching up after a vacation — what a wonderful post. I am so glad Meg is able to make her wishes clearer to you. I hope to hear more about her!
Adopting a child for therapy purposes, like someone might adopt a dog from the shelter as a service animal? Good grief, we certainly live in a bizarre society.
My kids learned a lot from each other… my daughter encouraged my son to get out and play more with other kids, while he gave her a lot of help with math and being more disciplined with schoolwork in general.
Yay for Megan, sounds like she’s doing great!
Just returning from out of town and saw this post … wonderful news!!!
Oh, my goodness. I am smiling and smiling for Meg’s newly displayed abilities.