Tell the parent of an autistic kid

Miscellaneous and Personal Stuff I Must Share
1

For about four months now, we’ve been investigating exactly what’s up with our youngest child. It was clear something was. Last thursday, it became official - he’s autistic.

This was not exactly a big surprise, since every health professional we’ve seen in that time (child development nurse, speech therapist, psych, paed) has been saying things like “hmmm…could be autism” - “yes, autism is a distinct possibility” - uh huh. Looks like autism to me". It does seem to be a suprise to lots and lots of our friends, who say things like “but he makes great eye contact with me!”. And I can hardly blame them, since four months ago I was pretty much blindsided myself.

Thankfully, Daniel has got about as mild a case as you can have and still be considered officially autistic. He has small imparements across the board - nothing outstanding or insurmountable-looking, just a lot of different stuff generally dragging him backwards. We’re doing speech therapy with him at the moment (which is, in fact, fucking brilliant and has helped him immensely) and lots of social stuff.

So… I know there are plenty of people on this board who have experience in this area - parents, professionals, even the occasional autistic person popping in themselves. I wouldn’t say I’m entirely ignorant on the subject any more - I figure I know about as much as anyone who’s spent four months reading up on anything vaguely significant she can lay her hands on.

What do you know that I don’t?

2

I have a couple of kids with a lighter shade of autism in my scout group. They love the structure and the other kids learn a lot as well. Could be worth a look as long as the local scout group is inclusive.

Come to think of it a lot of kids with what I would call developmental concerns [pardon the offense if taken that way] in scouts over the years. Again structure and rules they seemed to like, bragging about going canoeing or similar at school go them some points as well.

3

From all parents of mildly autistic kids I’ve known, early intervention is the key, and it appears you’ve done that.

One of my friends at work has a son who was diagnosed with mild autism at age three. A year and a half of intensive therapies later, and his doctors say that if they had to diagnose him today, they wouldn’t even put him on the spectrum.

Just make sure you take advantage of whatever help you’re given.

4

My son wasn’t diagnosed until he reached kindergarten, but he did receive therapy before then.
Prior to kindergarten, he received PT, OT, saw a Speech Language Pathologist, and had a Cognitive Intellectual Developmentalist on his case a various times. He qualified for these due to extreme prematurity.

At school, he had PT, OT and a (remarkably good) SLP who also doubled as a social skills trainer.

At home, I used “Social Skills Activities for Special Children” by Mannix, which I always like to add is good for ‘non-special children’ as well! Another very important factor is that we always took special steps to ensure he had a least a couple of good friends at school who could help him, relay problems to us, and ‘watch his back’ when necessary.

Finally, we always strive to encourage his strengths and minimize his weaknesses.

My son is 13 now and has been booted from all SPED programs.The combination of therapy and age/experience has allowed him to be remarkably functional. He has a small cadre of solid friends who help and protect him, and he uses his musical ability as a springboard to connect with other people.

We will never know how prematurity contributed to the autism or how autism aggravated the complications of prematurity, but ultimately it doesn’t much matter if the intervention is good.

5

Forgot to add a note about safety training.

Each kid has their own set of unique problems. Mine can’t lie, so he doesn’t understand other people lying or not telling the whole truth, and has few self preservation skills.

One example was my kid telling me “Me and Arnoldo are going to the store to steal some candy.” After much discussion, I asked him, “So , now what are you going to do?” and he said he and Arnoldo were going to go to the store to borrow some candy. More discussion. I asked him again “So, now what are you going to do?” and he said he and Arnoldo were going to go to the store to buy some candy.

Ultimately, I felt that Arnoldo was going to send my kid in to do the stealing, so I nixed that friendship and got a good social skills and safety training out of it.

I culled the bookstore and internet to develop a safety program that I called “What Would You Do?” or “The Safety Game” that I did with both kids in 1st, 2nd, and 3rd grade or so. (There are a couple of books with that title that I read, but I didn’t use them exclusively.)

There are rules such as “Always ask your parent” and “All areas covered by a bathing suit are private areas” and “Grownups don’t usually need help from kids” and “Hugging and kissing is not required” and “Never get closer than a bicycle length to a car”. I ‘played the safety game’ where a scenario is presented and the kids have to describe what action they would take. You can never ‘get ahead’ of all the potential problems, but you can plan for common problems kids encounter such as “What would you do if school let out and no one came to pick you up?”

My son’s strength is music. He just took some top honors in an music contest this week, and a girl was so impressed with his playing that she approached him and gave him her name and phone number (nothing like this has ever happened before {he is usually socially shunned} and he has just recently noticed girls, so this is a pretty big development!) As soon as we noticed he showed a musical interest, just a year and a half ago, we went out of our way to encourage it by getting instruments, lessons, discs, players (MP3, pod, boom box, etc). He also picked out the tunes to his favorite video games which has attracted some friendly attention at school- another first.

We have been extremely fortunate that his area of perseveration has been flexible enough to change and that he changed to something socially popular. Some kids get stuck with Thomas the Tank Engine forever.

So, really, I guess my best advice is to identify your child’s strengths and weaknesses and address them as best you can.

6

My little girl is right on the outside of the spectrum, “autistic features with sensory processing issues”. Primarily auditory processing. The initial DX was classic autism but that speech and OT really brought her out of her shell. Her psychiatrist didn’t want to give her an official diagnosis until she’d been in therapy 18 months, and I’m glad he waited because I didn’t want her stuck with any labels when we weren’t sure. She’s in regular kindergarten classes with and IEP with a Behavioral Intervention Plan because she really has been having a hard time this year. For pre-K they had her in CDC but now she scores so high academically they wanted to put her in the least restrictive environment. Honestly I’m thinking of trying to get her back in CDC classes or just get more help. She has speech therapy twice a week in school and goes to a clinic for another hour a week. She has an OT every week in school and has just started back on auditory processing therapy with the modulated CDs and special headphones. She was on it last year and it seemed to really help with sensory issues. I don’t know if you’ve heard of it but the CDs are from Vitalsounds.com. Our OT has the CDs we check out but we had to purchase the headset. Definitely worth it though.

I don’t know since you have an official DX of autism, but I’ve had to really push for everything when it comes to school. The third time this year my little girl was written up for outbursts in class I had to go through everything I’d already gone over with the teacher and principal because they still didn’t get that this is why she has an IEP, that she DOES have special needs and one of those needs is understanding her behavior issues. She has outbursts when she’s overstimulated and tends to spit out words repeatedly (looks kinda like Tourette’s but it isn’t) when she’s nervous. One time another kid called her stupid so my daughter smacked her in the face. She was only five and has the language skills of a 3.5 year old so it’s hard for her to express herself. We have to find that balance where we understand her true needs but don’t make excuses for bad behavior. Obviously smacking another kid is wrong but she didn’t know how else to express herself because the words just don’t come. Her teacher seems to think it’s a brilliant idea to punish her by making her sit out at recess, but she’s also hyperactive so she needs that time. I’ve asked but the teacher refuses to give in, saying if she’s in regular ed she has to adhere to regular ed. classroom rules or she gets the same punishment as the other students. This is an extended day school from 8-4 so the kids really need that time to get out and play. We have a new IEP meeting next week and if I can’t get some sort of satisfaction I don’t know what I’ll do. It can be quite frustrating.

But still she’s a joy. Clever and funny and so loving. She is very smart and advanced when it comes to anything math related. I think really focusing on language is the key. We work together every single day together, after the school stuff, after the therapies. When she started out she had the language skills of an 11 month old at three. She was practically non-verbal except for echoing. At six her last testing had her at 4 years. She’s getting there. Lately she asks, “What does that mean?” about twenty times a day. I love it. :slight_smile:

7

The Asperger’s Association of New England has a lot of good resources for people on the spectrum. Even if you don’t live in New England you may wish to join them. They will send you a big folder full of info. Click on the link for “Information Packet.”

8

My daughter has high-functioning autism too.

I don’t know that I know anything you don’t know (heh); I kinda just focus on what she needs as a person, rather than what her label says she needs. The label is there to help give other people a starting point when trying to understand her.

Similarly, I encourage her to focus on what she is really like and not worry too much about the label - after all, she doesn’t wear dresses all the time just because she’s a girl, does she? Generalisations are only helpful as long as you remember that they’re generalisations and not all of them apply to everyone.

My friends have all been surprised about her diagnosis, except for a couple who work in that field, and all her teachers have been completely unsurprised. They haven’t all been very helpful, but a a few have, which I think is more than would have been if she were just ‘that weird kid.’ You have to be a lot more proactive than you would need to be if your child weren’t autistic, I reckon.

9

Ca3799, is prematurity supposed to increase the chances of autism? How premature was your son? 'Cause we know someone who was way premature, three months, and we are wondering. Unfortunately, this person is an adult, so there’s not a lot that can be done at this point, but still it would be nice to know. Even a formal diagnosis would be good. Can that be done for adults?

10

Yes, autism can be diagnosed in adults. A lot of conditions which are famous on kids came to light on children and may be more easily diagnosticable in them because kids have all these grownups worrying about their development all the time, but they’re diagnosticable in adults and numbers for adults are growing: autism spectrum, ADD, ADHD, dyslexia…

11

My son was born at 23 weeks and yes, there is a link between prematurity and increased risk of autism.

I think adults get diagnosed at the psychiatrist’s office, which seems odd to me as it’s not a psychiatric diagnosis or one generally treated with medications. I guess they are just the folks with the testing tools.

12

A few pieces of advice from the aunt of an autistic four-year-old:

  • Even though you’re not completely surprised by the news, you need to give yourself and the rest of your family some time to grieve. Don’t expect to be completely okay with it for quite a while.

  • Don’t isolate yourself; if you’re not comfortable getting together with people who you’d have to explain his condition to, find other families with autistic children so you can vent and trade ideas with them. This will also give him the opportunity to meet kids like himself.

  • Don’t go off the deep end with all the crazy theories as to what might have caused it. (All scientists know for sure is that it has a partial genetic component and a partial environmental component.) All you’ll do is doubt yourself and take up valuable time you should be using to help him. On that note, if there are any research projects going on in your area, feel free to enroll him in them. He could be the piece that solves the puzzle!

  • Don’t think of him as “my autistic child”; think of him as “my child who has autism”. Don’t let his condition define him. LOVE HIM FOR WHO HE IS. He didn’t choose to born this way any more than the rest of us did.

  • Open yourself up to what he can teach you. (I’m amazed at how patient and forgiving I’ve gotten to be with the mentally disabled people I meet. Before my nephew was diagnosed, I would’ve thought that they were “weird” and not anyone I had to bother with. Now I can see him in people like that, and I’m not afraid to make conversation with them.)

  • Give him the opportunity to express himself in ways that don’t require words (hugs and kisses, music, art, dance).

Good luck; you both have a rough but rewarding road ahead of you!

13

We had a team that seemed to be led by the psychiatrist. There were tests from all over though, from neuro to speech paths to psych.

14

So I guess we can’t call you Aspi anymore then? :smiley:

Seriously Aspidistra, I wish you and all your family well. There’s some terrific services in Melbourne, and one thing I’ve learned from friends who’ve been there done that (and I’m sure you’ve heard the same) is that you need to be LOUD and VERY PERSISTENT to ensure that those services become available to you as you need them. This is especially true for those with the milder forms of Autism where early intervention programs are the most beneficial, but often denied because your kid isn’t as obviously delayed.

Best of everything for all of you. :slight_smile:

15

I don’t know anybody who’s diagnosed with autism, AFAIK, but I know people whose diagnoses included “information overload problems”: I know that one of the things their families learned to do was figure out the early and medium signs of overload, and so when to push the kid a bit further forward and when to stop pushing. Put in those terms, it’s just a normal part of parenting: the difference was in the signs themselves (where another kid might start fussing, LA would start looking scared) and in which were the “problem” areas and the reactions to encountering a problem area for the first time (neuroboring nephew encountering jigsaw puzzles: “yay!”; neuroboring niece encountering jigsaws: “this is BOring”; LA encountering jigsaws: “WAAAAAAAAAAAAAAAAAAAAAH!”)

16

Do an internet search on autism support groups in your area. Parents are especially helpful. I found it’s a lot easier asking other parents as a starting point.

17

One of the best bits of advice I can give…don’t make the mistake that “oh he’s only mildly special needs so he doesn’t need stuff like camps or even schools/programs for autistic kids.” I am “mildly disabled” (LD and hard of hearing) and my parents pretty much maxstreamed (mainstreamed to the max) me. Ii know the thinking is that kids who are mildly affected by their disabilty don’t really need specialized programming, and should just be mainstreamed. However I know many parents of kids with mild issues who were told that they didn’t really need more specialized stuff…then they tried the more specialized stuff and it turned out that the kid really thrived with the more specialized approach.
It does sound like he’s more on the LD social impairment spectrum, rather then on the “the skin on your arms is strectchy” severe HF autistim spectrum. meaning he doesn’t need interventions for “classic” autism…but he could benifit from
autism programming like camps and maybe social skills classes.

18

I love this idea. It just so happens that we’ve got an older sibling to practise on who’s in great need of more skills in the “thinking things through” department too. Hmmm…

There’s a great online autobiography by an autistic guy which I read recently, and at one point he describes how his mum always used to lay out his clothes for the next day every night, and one night she forgot the undies. So the next morning he was completely stymied - you can’t put on your pants without your undies! But there’s no undies! But I need to put my pants on! But there’s no undies! And the idea of getting them out of the drawer he was standing right next to just didn’t occur… It seems like that ability to consider options, and different strategies, is one of the things that is commonly really hard for autistic people - and maybe the one that it’s hardest for Us Other Folks to understand why they find it hard…

Rushgeekgirl I certainly hear some horror stories from other folks on my online support group. Amazinly though, through no design of ours, we seem to have ended up at a school (that my older kids are at now) which has a great reputation for being good for special needs kids of all sorts, and has at least four ASD kids there already, including one in my oldest daughter’s class (I asked her casually “what do you think of E. in your class?” Turns out she thinks he’s a prat and a male chauvinist! :o. -1 for ASD/NT relations)

Heh. :cool: My husband never was much into me calling him “Mr Aspy” on the boards anyway… That means I need to find another cute nickname to annoy all those people on the board who hate cute nicknames for people’s SO’s though! I’m not sure my sleep-deprived creativity is up to that.

That’s a good point, thanks. Your perspective is a good one for me to remember.

19

My good friend has a child who has a similar diagnosis. They also live here in Japan (the father is American and the mother is Japanese) and they’ve been back to the States a number of times for diagnosis.

My friend and I used to work in the same building and we’ve have lunch weekly, so I’ve heard the story from before he was diagnosed, through the stages you are in and since. The boy is 5 1/2 now, so it’s been a couple of years.

A few things which I’ve picked up vicariously.

One good thing is that you got him diagnosed young. That helps tremendously, and therapy is getting better all the time.

You will need to become an expert on everything and work at getting him the right help. Don’t leave it up to the experts.

Highly functioning autistic children often will have areas where they need special help. My friend’s child, for example, will come up too close to other children, and needs help learning to stay the right distance away. However, since it’s a known issue, my friend is able to anticipate it and has a way to work with it before it’s an issue.

The boy is really sweet and can be quite a joy. Don’t lose sight of that.

20

I’ve got an acquaintance who has a mildly autistic child, now about 6, I think. They caught it early and have had a great deal of success with very early de-sensitization training. This was a huge help in overcoming food aversions, information overload issues, unusual behaviours and the like. Now the biggest issue seems to be hyperfocusing. They are working with that by secretly “planning” occasional interruptions in scheduling and day plans. Every time they do this, they do something positive so that he is slowly building up a tolerance to random interruptions. So far it seems to be working. He is a happy little guy.