Sunday, 23 November 2008

Autistic Spectrum Disorder

Ever since they were toddlers, my two grandsons have been mad about trains. They started off with plastic baby toys and then went on to wooden Brio. Later, their interest was focused on mechanical and electric train sets. 
They are both obsessed with computer games that have anything to do with trains, such as a Lego train game with different variations of building tracks and layouts. They would both spend all day on these computer games if they were allowed.
They have always liked going on train rides. This started off with small rides by the sea on miniature railways and progressed to proper steam trains like the one above. Though why the seat was tied down like that, I do not know. I'm sure it wasn't because my grand sons were coming!

The oldest grandson has just been diagnosed with Autistic Spectrum Disorder, at twelve years of age. I have mentioned before that I wouldn't have been surprised if he'd have had Asperger's Syndrome, but no, it is not that. Apparently Rick doesn't have the obsessions that go with it. Children can have intense interest in something, apparently, and not be unusual.
I've mentioned before that he has been really struggling with Secondary School and had been appointed an extra helper even before the disorder was diagnosed. It isn't as though he doesn't understand the work. He is quite clever when he is focused on anything. He just has a problem with emotional and social skills and sticking with things that don't interest him.
He likes to play with younger people and is usually very good with them. Sometimes, though, when I think he is acting unfairly to some other child, I have asked him, "How do you think that makes that child feel? Happy or sad?" He has usually replied to that kind of question, that he is not sure, which has often made me rather annoyed, until now that is.
It's the same with eye contact. All of us have had to say to Rick, "Look at me when I talk to you."  However, I often have to say that to the children at school, even the ones without a problem.
Rick often stares at the speaker, with such intensity, and that doesn't seem right either.
Usually, if we ask a question that involves a feeling, he will giggle and look awkward as he genuinely cannot answer something that he cannot understand.

Much of the time he is fine, but certain things cause a problem. Excessive faddishness with food, to the point of almost starving himself if he doesn't have the right brand of bread. Or his beans are touching his chips and he has to have them put in a dish away from the dryer foods. He is very thin, like a bean pole and Dean, who is younger by two years has always been a larger and sturdier child. So we cannot make it too difficult for Rick to get enough to eat.
He is under a dietician at a hospital and is waiting for blood tests to see if there is a medical problem.
He refuses to do homework and anything else that he really doesn't want to do.

So far, we have not had any advice as to what to do about behaviour and although Rick will be followed up at the hospital now, Deb and I are having to look up on the net to see exactly what the condition is. However, there doesn't seem to be any guidance about what to do. Most children are picked up at an earlier age.
What will happen about exams?
Will he ever have a normal relationship when he grows older?
Will he be allowed to drive?
What about work?
So many things are going through our  minds right now.

I know some of you have autistic children or grandchildren. Could any of you point me in the right direction as to what books I could read. Where do we go next? 
I realize that the condition varies from being very severe to mild and that it might not be as easy to find answers to our questions.
However, opinions and help would be much appreciated. We both feel we have been left to our own devices. Help!


Suburbia said...

Maggie, I'm glad you have a diagnosis, it's so much better if you know there is something specific, as you said, once you know you can make alowances instead of getting annoyed by his habits etc.

His food habits reminded me of the autistic child in the book by Mark Haddon called The curious Incident of the Dog in the Nightime.I think it's quite common.

And have you ever visited here ? there is lots about autism there.

lmerie said...

Hey Maggie . . .glad you have the diagnosis too. I have nothing to offer but a prayer.

Hope that the right doors open to answer your questions and guide you and your daughter.

Mean Mom said...

It must be a bit of a relief that you finally have a diagnosis. At least his current school had recognised that he needed some extra help. What a shame that his primary school didn't realise.

I'm sorry that I can't be of any use with this problem. I hope that you manage to get hold of some helpful information.

Wendy said...

It seems to me every time we turn around there are more and more children diagnosed with something. Whether autism or something strange, it is frightening.

As I posted a while ago, my granddaughter has been diagnosed with eosinophilic colitis. Something we'd never heard of. And almost every child reacts differently to different foods and therapies - making things doubly hard. So I know what you are going through.

I like the way you handled Rick's teasing a younger child: How do you think it makes the child feel?
Even though he couldn't answer you - it gave him something to think about.

My younger son has Tourette's syndrome and one day at school,(when he was about 9) one of the older children made fun of his "tics". I used this example to teach him never to make fun of children - because he has just experienced how it feels.

Sorry, I don't have any info for you. Get on Austitic support sites and message boards. Support groups have worked wonders for us dealing with my granddaughter's illness.
God Bless.

Jeni said...

I know you've been waiting, anxiously, for this diagnosis and glad you finally got that much squared away. Because Autism is so strange, quirky, at times, in how each child reacts and responds, it's hard to give one solid piece of advice because it's not a "one thing covers all" type of thing. Helping them to understand feelings, social situations and such is often a very big problem. We're dealing with that frequently with Maya now -especially with her school as there is a little girl in her class that she has been doing what would be considered to be bullying. Trying to get her to comprehend that you don't do things like that to other kids is sometimes what feels like an exercise in futility but you just have to keep looking for some little way to explain it in a manner that sinks in to the child. The one thing I will tell you this much -you will gain legions in the patience department! Trust me on that one! I've never had a high level, not even a medium level of patience but since Maya and now her little brother Kurtis came along and with both of them being autistic, I'm learning patience! Boy, am I ever! The food thing too -quirky stuff there. These two kids tend to eat pasta day in and day out it seems. Fortunately, I love pasta too and don't mind making it but a change now and again is nice. However, I usually end up having to fix a box of macaroni and cheese or just fix them grilled cheese sandwiches if we are having a meat and potatoes type meal which neither of the kids care for. The things one does just to have a sane meal at times ya know!
Sorry I don't have any hard, fast advice for you but you'll figure out a way to get the message across there although be prepared for things like this to be very time consuming to get the comprehension you want to see take effect.

Anonymous said...

You have had this "gut" feeling for a while now that something seemed different. I'm glad you got the correct diagnosis, it should get him the extra services and support that he needs. Each child on the autistic spectrum is so different. The biggest thing is to keep focusing on his strengths and what he does well. There is no way to predict the future, but with love, nurturing and extra support with school and services, I bet he will do very well. You can also check out Marla at she has a huge amount of information.
Sending hugs and support!

Rose said...

Maggie, I can't offer any specific help to you, but I am so glad that you do have a specific diagnosis. At least now you know where to start and what to look for in researching this condition. Autism is being diagnosed more and more frequently in children, and I know there's a wealth of information out there. I know there's no "one size fits all" treatment, but I do hope that now you and your daughter can find some suggestions that will help your grandson.

At least the school is taking a positive step by giving him extra help.

Casdok said...

Its a bit of a minefield to start with isnt it?
Do you know if there is a local branch of the National Autistic Society? If the are a good group they will have lots of information and various activities going on to help with social skills. Support groups etc

Does Rick have a statement?

With this he may be given extra support and time to do exams? And yes many autistic adults do drive, have relationships get married have children and have successful careers.
Please feel free to email me if you want a chat. :)

david mcmahon said...

Maggie, how I wish I could help. I would have thought, like you, that 12 is a bit later than it would normally be diagnosed.

Your family is in my prayers - but you know that.

Rinkly Rimes said...

I have never heard of the situation you describe, but I have a friend with an adult autistic son and he leads an almost normal life.I do hope all goes well with your family.

Anonymous said...

It doesn't all have to be doom and gloom - our autistic children are wonderful and an inspiration to anyone and everyone. My thoughts and prayers are with you.

There are various organisations that you should have access to - the NAS being one them. But you will most likely find that you have access to groups in your area, parent groups where you can discuss the child and learn more about the condition. It's a difficult and confusing start for anyone facing this condition but it does get better. You have my email address.

CJ xx

Dr.John said...

Perhaps you could google autism and look for parents of autistic children that have blogs. They are much more likely to be able to help you.

Dusty Spider said...

Getting diagnosed is the first step. It's hard for the people who love him at first but now you can work at getting him what he needs. Big hugs for all of you. Flick x

Lavinia said...

Maggie May, have you heard of Betsy's blog, "".

She has experience with autism and a really wonderful blog. Also links to other autism blogs.... Worth checking out.

All the best to you and your family as you try and find answers and cope with the diagnosis. I think that the more you find out, the more reassured you'll be.

Strawberry Jam Anne said...

It is good news that you have a diagnosis at last Maggie. I have no experience of this particular disorder, but do wish you all well in finding the best support groups etc and thereby learning how best to deal with it.

A x

cheshire wife said...

You may feel that getting the diagnosis should in some ways be the end of the problem but I think that you have to consider it as more like the beginning. I am sure that you will find that there are oceans of information out there but it is knowing where to look and working out what is relevant.

Good Luck with your quest for information. I am sorry that I can not be more helpful.

OvaGirl said...

Maggie, I'm sorry, this must be very worrying for you and your family. i hope you can find the information and support you need. xxx

Fat, frumpy and fifty... said...

to climb through the maze of information online etc....good luck, well thught POTD!

Hilary said...

I think one of the best things to do is to read blogs of people who ARE autistic themselves. As someone else said, it's not all gloom and doom. There is a lot of bad information out there. We need to celebrate neuro-diversity!

autism vox
Existence is Wonderful
Drive Mom Crazy
Wrong Planet

Just a few places to peek...

menopausaloldbag (MOB) said...

Great you got a diagnosis. The food thing? Lots of children who experience this spectrum of neuroligical conditions have allergies to food. It's worth considering alongside the obsessive compulsive need to keep food seperate. You've got a lot of great advice here from people really in the know. Good luck.

Louise said...

I do not have any specific places to tell you to turn, but I know in Blogland, I have seen a lot of sites that deal with autism, at least some of the time. To me, that would be where to find the most answers--from other parents and grandparents dealing with similar situations.

My heart is with you. Not knowing answers is one of the hardest things in the world.

Hilary said...

Just dropping in to let you know that I'm sending my best thoughts your way. I wish I could help. I know nothing on the topic. I hope you'll find some answers and help soon.

Maggie May said...

Many thanks everyone for your useful and helpful suggestions. I have got lots of sites to look up now and I'm sure my daughter will be very pleased too when I share the information that I have gained. Its good to know that so many people care. Thanks.

Hadriana's Treasures said...

Maggie, I can't add much I'm afraid. Suburbia has already mentioned the book I enjoyed written by Mark Haddon. I'm going to come clean. Normally I would claim that I know a smidgeon about something but this time - zilch. Sorry Maggie! Good luck with it all. Hx

Robin said...

Maggie, what a year this has been for you. My favorite books are Dr Kenneth Bock - Healing the New Childhood Epidemics: Autism, ADHD, Asthma, and Allergies: The Groundbreaking Program for the 4-A Disorders and Facing Autism by Lynn Hamilton.

Because he is older, he may enjoy Freaks, Geeks & Asperger Syndrome: A User Guide to Adolescence by Luke Jackson, a boy on the Spectrum.

(My two youngest were diagnosed autistic.)

RiverPoet said...

Maggie, are you ever in luck. I happen to have a son with Asperger's Syndrome, though he is quite high functioning. We had a terrible time of it when he was in middle school (right around the age as your grandson). In fact, I pulled him out of school for three years and homeschooled him. He is now a wonderful, successful young man. I'm particularly happy that he has a real date tomorrow, as social situations (particularly where girls are concerned) have always been problematic.

Recently I met a woman at the coffee shop who works with children who have autistic spectrum disorders. Her name is Cindy. If you email me, I'll provide her email addy to you. I realize you're across the pond, but perhaps you can discuss some of your questions with her. She was a wealth of information and so NICE! She uses a method called Relationship Development Intervention (RDI) which has been showing a lot of promise. Bear in mind, too, that your grandson may be acting out more than usual because of his inability to process and express grief.

And there is another blogger who has a son with Asperger's - Shrinky. You do have her blog addy, yes? If not, let me know and I'll email that also.

Peace - D

lmerie said...

I am back to say congrats!

A very good post for the list!

aims said...

Thinking of you and yours Maggie.

elizabethm said...

Maggie I am so pleased to see you have replies here from casdok and crystal jigsaw. They are both great people with a wealth of personal experience and I do hope you get in touch. i am sure it would help to people who have learnt through living with it.
all the best to you and yours.

Jules~ said...

That has got to be so very frustrating to not be getting the answers you need from the doctors. I am so sorry that is going on.

I was reading thru everyone's comments in hopes of you getting some needed information. You have wonderful loving blogger friends. I was going to suggest, just like River Poet, that maybe you could talk with a blogger that goes by the name Shrinky.

My prayers are with you.

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