" In a box not a bottle" Asperger's revealed

[thejigsup]

Yeah, my son was diagnosed at 9. Even before that, though, his teachers were tops, just wonderful! Middle school? Completely different. That is where my horror story with my son's education began.

[Seraphim]

Yeah ,he had some teachers that were really good and some I would've just loved crack their head. Some principles didn't like him or didn't like any child that was different. When we got here and his grade 8 year that principal has a reputation for singling out kids that are different and making their life a living hell. Unfortunately ,I didn't know that until too late. She would also give him punishment for being a victim of bullying. I have since heard from many people, parents and students included through various mediums that she love to punish victims of bullying. I know I went to her six times a that year because of intense bullying and finally threatened to call the police because obviously she couldn't fix the problems in her school. I heard though that she retired at the end of the current school year. THANK GOD! Although if you were an average kid yeah those people and parents loved her but if you were disabled kid you got nailed ALL. the .time.

[Seraphim]

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[Seraphim]

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[Seraphim]

The first program he has ever attended!

 

The intake for the ABA actually went really well! She's a younger girl in her 20s. My son actually came down and stayed for the almost the entire interview and actually talked!! He never does that!

 

From the intake evaluation we have nailed down some goals.

 

1. Starting a conversation

2. Ending a conversation

3. Give-and-take or reciprocity of conversation

4. Expressing your feelings

5. Giving affection without a prompt

 

They are also going to take them out into the community and do shopping and working on independent living skills.

[Seraphim]

It is pretty scary to think that in the years before the 1990s parents with autistic children were treated like they were the cause of their child's autism and they would blame parenting style as if that was the cause. Even today you will still find morons that will blame your parenting style for an autistic child meltdown. You see it all the time on forums where people will just say your child acts like a( r) because you're a crap parent.

 

People like that just really really really really bother me. And I have told a few to F off.

 

I don't mind educating people about autism . I don't my educating people about my son and how he experiences autism. I have no problems with that. What I have problems with are ignorant jerks.

[abitbroken]

I went through that. If the principal wasn't there to know who started the fight - and there were no witnesses as to that as far as a teacher or hall monitor that saw it break out - they punish BOTH kids. They wanted to suspend me for three days AND the girl who was beating on me, too.

[Seraphim]

I went through that. If the principal wasn't there to know who started the fight - and there were no witnesses as to that as far as a teacher or hall monitor that saw it break out - they punish BOTH kids. They wanted to suspend me for three days AND the girl who was beating on me, too.

 

Yeah and them doing that is complete BS.

[Fudgie]

The college that I went to, in the 70s and 80s, used to teach that autism was caused by "refrigerator moms". That was a question on a test back then! One of my profs was older and he remembers teaching it. That's what was believed in the scientific community at the time. Of course, he knows it's completely false now but when we talked about autism, he always brought that up as an example of how you can get things really wrong.

[Seraphim]

Yep, it's pretty sad.

[Seraphim]

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Early Intervention

We were discussing early diagnosis/identification and early intervention/therapy over on the Facebook forum for this blog and a reader, Megen Porter, made a deeply insightful comment: “It’s almost like early identification is important so you can intervene on yourself as a parent.”

 

What a brilliant way to put it, Megen! Thank you!

 

The standard meaning of the phrase early intervention is to jump in with hours and hours of therapy to try to get an Autistic child to be “indistinguishable from peers” as quickly and as thoroughly as possible. This means extinguishing Autistic behaviors, even absolutely harmless ones that are beneficial to the Autistic person but embarrassing or off-putting to onlookers, the classic example of which is hand flapping.

 

But Megen put a lovely spin on things by pointing out that it is the parents who need the early intervention. When autism can be recognized and identified early, the parents have a golden opportunity to begin working to understand the child they actually have. They can now learn about autistic neurology and stop interpreting their child through the wrong lens. Their child will be happier, healthier, and feel more love and acceptance for who they truly are once their parents’ fear and confusion has cleared away. Parents can avoid shaming their child for being different and can come to understand that their job is not to try to shape their child like a lump of wet clay but to celebrate who their child is and work from there.

 

Of course there will be some kinds of specialized education. All children get education at home and at school, and identifying children who are neurodivergent in various ways means that those children can get more targeted education that works with their brain, not against it. Autistic children might need extra mentoring in coping with processing sensory input. All children need to learn how to self-soothe — none are born knowing that. Autistic children often need extra mentoring in that area. Later, it might be extra important that an Autistic child gets academic directions in a written form in addition to or instead of a spoken form. Or an Autistic child might need help with finding a method of communication that works well for that child since speaking isn’t always the optimal choice. These kinds of interventions are very important.

 

But the most important early intervention — and the earlier the better! — is for the parents. Let’s all work to help parents of newly-identified Autistic children with their early intervention program. What can you do to help?

 

When someone tells you that their child was just diagnosed, don’t say “I’m sorry.” Say, “that’s great! Now you know what is going on. I’m so glad you have that information.” If you’re a hugger and they’re a hug-liking person, add a hug in there. Be friendly, encouraging, upbeat. If they are telling you this because your child is Autistic, there are other things you can say as well. Talk about the ways that it was helpful to learn about your child’s autism. The newly-aware parent is probably feeling overwhelmed with all kinds of emotions. Emphasize what is good about getting the diagnosis to help that parent get a good start on this new phase of their life. Remind them that their child is still the beautiful, magical, wonderful child he or she has always been. Let them know that the only thing that has changed is that there is more information now, to help them understand their child better.

 

We should all be as supportive of one another as we possibly can — parents, children, adult Autistics, professionals, everyone. But let’s all try to be extra supportive of the newly-aware parents among us. If you are the parent of Autistic children, don’t white-wash your life but do spend a little extra time talking about the good things. Spend a little extra time talking about great solutions you found that made your child’s life better and, by extension, the whole family happier.

 

Remind the newly-aware parent that *all* parenting is challenging. This is especially important, because parents whose children are not Autistic cannot say something like that. A parent who does not have an Autistic child is offensive if they remind others that all parenting is challenging because they are not speaking from the same set of experiences, but if you are parenting an Autistic child, please do take the time, when it feels appropriate to you, to remind others that all parenting is challenging because it help to put the struggles of families with Autistic members into perspective. Too often I see *everything* blamed on autism. Other families say “it is hard to transition from one grade of school to the next,” or “that first day of kindergarten is so hard because so many kids get upset when they realize they’ve been left there without mom and dad,” or “the hormonal changes of pre-teen and teen years can be so chaotic!”

 

Remind that newly-aware parent that they get to say those things, too. Of course it is different with autism because we Autistic people experience and think about the world differently, so we add our own individual flavor to every challenge of growing up and living life. But we are not off in our own world; we live in the same world as the rest of you. We are struggling with the same things everyone is: learning, growing, changing. Our life stories are unique, but just because everything we experience and do is “autism colored” doesn’t mean that everything about our lives that is challenging for those around us is “all the fault of autism.” Gently help that newly-aware parent to realize that blaming autism for everything difficult is the same as saying, “my child’s worldview sucks.” Gently remind them that children are not very good at separating the ideas of “my brain is different and that is a horrible thing” from “I am a horrible thing.”

 

And, honestly, I think the kids got it right. Any time I try to set my autism on one side and heap all my troubles over there with it and set “me” on the other side and heap all my joys there, I get a massive cognitive dissonance headache. It can take a long time to get there, but help those newly-aware parents learn that autism is not something their child has; it is something their child is. Help them shift their perspective so that they don’t fall into the trap of hating autism and loving their child because that’s a Gordion knot that gets harder to cut through the longer it is being knotted together. If you try to stick a sword into that, you’re inevitably going to cut your child because it is impossible to find the place where autism ends and the child begins. Because that place isn’t there. There is a reason the medical books call autism “pervasive.” It is in every part of a person — there is no part of me that is not Autistic. My brain is an autistic brain and everything I know, see, taste, hear, think, remember, hope, wish, feel, and do comes from that autistic brain. Help the newly-aware parents understand that if they love their child (and you know they do!) they are loving an Autistic child and that’s a good thing.

 

Early intervention is so crucial for future success. The faster we can get to those newly-aware parents, the more quickly we can soothe their fears, lead them to acceptance, help them to see the joy that they are inheriting from their children every day. Sure, it will be hard — all parenting is. Yes, there are things they can do to increase their child’s chances of success. But they need to be canny and learn as quickly as possible that not every professional has their child’s best interests at heart. They can be choosy and only take those therapies and lessons that help their child to grow strong and healthy. If we can get to those newly-aware parents as quickly as possible, we can save their children a lot of suffering and the parents a lot of grief and guilt. As Megen said, “early identification is so important!” And it is because we have the best chance when we can all help newly-aware parents with the early intervention they need so badly in order to thrive and to help their children thrive.

[thejigsup]

There are wonderful things you go through when you are the parent of an autistic child. No parent is happier or more proud when their child is finally potty trained, when they learn to tie their shoelaces, when they get student of the month, when they graduate from high school, when they bring a friend home, or when they do so many things parents of "normal" kids take for granted. Along with the pain, there are more moments of joy to be had than parents of neurotypical parents get to experience.

[Seraphim]

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[thejigsup]

I don't see changing the system for all children just to accommodate children on the spectrum. Make the system you use for them fit them and let neurotypical children's system stay in place for them. Everyone doesn't have to fit in the same system. There should just be more than one system used.

[Seraphim]

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[Silverbirch]

My current clients don't have autism. Some have borderline intellectual disability and a couple have mild-moderate intellectual disability (the term "retarded" is very politically incorrect in Australia). With my oldest client who is aged 50, his mother left when he was very, very young and then when he was preschool, he had a physically, verbally and emotionally abusive stepmother for a few years. English was not her first language, and we have been told she hated him. From what we can make out, a diagnosis was not made early and he lived in a relatively isolated rural region.

 

Despite all of this, he is by far, the sweetest, dearest, most living kind person I have ever known. I believe that if he had different parenting and early interventions, his life would be much more advantaged than it is. He does have some literacy skills but very basic - early primary school age equivalent, very little numeracy skills, but what upsets him most is that doctors will not grant him a learners permit to either drive a car or ride a motor bike. It's what he would like most in the world.

 

For the first time in his life, he is now cooking his own meals, washing his clothes, doing housework and grocery shopping. He does require a fair amount of support in the way of prompting as he does not have good planning skills and can only take in simple messages. Hopefully for him, we can help him develop skills through repetition and habit.

[Seraphim]

That is sad SB. That is so sad to see when people with disabilities are not treated properly but I'm glad he's getting help now. Yes the R word is very politically incorrect here too. They call it intellectual disability. Although some people with autism can also have an intellectual disability.

 

Intellectual disability I believe is defined by an IQ of 70 or less. Through testing they determined my son's IQ to be around 95. But they said his global cognitive IQ is extremely hard to place because in someway he is lower on the IQ scale and in other areas he's around 110. So they have placed him in the average range.

[Silverbirch]

Yes, diagnosing iq is not all that reliable, and something quite important that you don't read about - 2 of my other clients have had their iq assessed at around 70 so they are only borderline. If you met them, you would not know immediately that anything is not right. My clients are all affected with mental illness and that is their primar disability. Two of them have schizophrenia.

 

Anyway, there is this third client who had his iq diagnosed at 30, but I think he shows how deceptive that can be. He is much more "street-smart" than the others. He can do a lot of things the others can't - he has driven cArs and also wants to get a drivers license. He is I. The process of applying for his learners permit. Anyway, he has obsessive compulsive disorder which is believed to be caused by extreme physical abuse before the ago of seven. Then he moved countries and all I know is the relationship with the parent has been troubled and they are no lo gear in contact. He reads newspapers, can read maps, lots I see him do. Anyway, the OCD has played out with him taking serious drugs (heroin) and stealing, especially cars so he has been I. And out of jail since he was 18 years old. I had to go see him at police stTion over a matter and police were initially disbelieving when I told them he is compulsively clean. (He has lots of jail tattoos). He also has a really lovely side to him so we ate all hoping and doing what we can to support him so he doesn't go back to jail. He is in his early 30s.

[Seraphim]

My husband " had" bad OCD. But as far as a I know was never severely physically abused. Both his parents are OCD and my son is mild OCD. From some things I have been reading there is a genetic basis for it and some of it is learned. Anxiety has a large genetic base as well as environmental factors.

[Silverbirch]

Yes I'm sure you are right Vic.

[Seraphim]

My girlfriend whose daughter has autism just got her G1 license! I'm so excited ! That means that my son can get one too! He really wants to learn to drive.

[thejigsup]

My brother is an Aspie and he has driven since he was 16. It's not that hard. My son just won't, so I don't push him, but he could. Congrats to your friend's daughter. I know of people on this site who don't drive who aren't autistic. Give her a big "thumbs up" from me.

[Seraphim]

My brother is an Aspie and he has driven since he was 16. It's not that hard. My son just won't, so I don't push him, but he could. Congrats to your friend's daughter. I know of people on this site who don't drive who aren't autistic. Give her a big "thumbs up" from me.

 

Her daughter used to have so severe social anxiety she couldn't leave the house. But now that they have her on medication she's a little better. She can go out with her mom or her two sisters. And learning to drive is a huge step!!

 

She came with her mom to go to the movies the other night with me and her mother. She took to me like a duck to water! Her mom said she's never seen her do that with anybody.

[Seraphim]

This is autism awareness month but let's make it ACCEPTANCE MONTH. Don't just be aware of my son. ACCEPT and INCLUDE my son. Thank you.

[Seraphim]

SIGH. He is out of ABA. He said it made a HUGE spike in his anxiety. He was crying and shaking.