Autism

Why You Shouldn’t Wait For An Autism Diagnosis

 

My son was diagnosed with autism early here in the United Kingdom, where the current wait for an assessment for autism is over two years. In fact, Network Autism recently published an article indicating parents “tended to wait around 3½ years before receiving an autism diagnosis for their child.”

 

Our appointment at the now-defunct Battle Hospital in Reading was pushed forward because I’d embarked on a programme of early intervention with Nick, something the health authority in my area felt was egregious and unethical. It turned out that if you began teaching your child as though he was autistic without the actual diagnosis, it triggered alarm bells in the system. That isn’t a reason in itself to embark in a programme, but some parents currently enduring that two year wait might want to go ahead and embark on a programme of early intervention before the diagnosis. Why?

 

Because teaching your child is always a good thing. And because, in my experience, it can sufficiently annoy people that they bring the diagnosis forward so that they can apply their own notions of therapy.

 

Beware, however. Their good ideas may not be any better than your own. In fact, they may not have any good ideas at all.

 

I am often asked what we did for Nick in those early years. The combination of interventions we used fall generally under the category of Applied Behaviour Analysis. In short, ABA doesn’t ask what caused the autism. It is in direct opposition with the psychodynamic approach, which seems to me wholly inappropriate (if not scandalous) for young children with autism, though that is for another blog.

 

ABA looks at how to address all the deficits a child with autism has, whether those deficits are in attention, social interraction, language, play, or in how to use their body. It should NEVER use coercion or intimidation or “aversives” (punishment). The skill of a good therapist is in making the learning experience fun, not frustrating. Done well, it’s fantastic.

 

Most people think of ABA as drills. (“Touch the table.” “Well done.” “Touch the table.”) That is not how ABA is done—not in my house and not in any of the houses of parents I know who have embarked on such programmes. These days, good ABA is wildly imaginative, “out-of-the-box” therapy in which a person with a whole lot of knowledge of normal child development escorts a young child 1:1 through the milestones he or she has missed. You’ll know if it is good ABA because a child will love it. If he or she does not, fire everyone involved (and get retrained yourself).

 

 

In some ways, ABA is just like any parenting and coaching—just better, more informed, and with more of an eye on how our child was feeling during the learning process. My husband, our therapist, and I even used ABA to teach Nick how to ride a bike, for example. We did this not because riding a bike is essential to a child but because the balance and coordination required is very useful. We also hoped that he’d like it, once he “got it”.

 

It took a long time. We nearly collapsed with exhaustion on several occasions. However, Nick learned and he now rides his bike with the same ease as anyone else. How did we do this? We looked for external rewards (the bike was not at first intrinsically rewarding as it is with a neurotypical child) to incorporate into the process of bike riding. We formed a large cheering squad of well-wishers (or at least three of us) . We did it with patience and fun,  and with a view to how he was feeling throughout the “lesson.” Same as everything else we taught him, frankly.

 

But you won’t start with a bike. You may start with trying to get the child to notice you in the room. And the people who are supposed to help you (the diagnosing paediatrician? The health authority? The local education authority? Someone? Anyone?) probably won’t help you, though please let me know otherwise if you have a good experience because I would be thrilled to hear it!

 

If you are in the UK, think about giving the people at Child Autism a ring. I visited them back when they were called PEACH and Nick couldn’t talk or play or interact with anyone except me (and usually only to sit on me).

 

They helped me. I didn’t use any particular programme they were selling, but I did get a lot of encouragement. Their reading list is good on its own (though they might want to include the novel, Daniel Isn’t Talking, if only for inspiration).

 

You can check out an entire youtube channel from the Autism Behavioural Intervention Association to watch ABA in action with autistic children. I cannot tell you how much I wish I’d had this resource as a young mother.

 

Are these therapists perfect? No. Sometimes, they concentrate too much on discreet trials. Sometimes they are too verbal for the child with autism. They can forget to reward non-verbal communication or fail to wait long enough for a child to work something out. They are humans, after all, and they are on camera. But most of them are good. Very good. If you watch them you, as a parent, you will learn. And even if you don’t “do ABA right”, your child will learn, too.

 

Here is another reason not to wait for the diagnosis to start teaching your young child with autism: the diagnosis isn’t initially all that helpful.

 

For us, the diagnosis was a gruelling two hour procedure during which they tested our three-year old in various ways which were entirely ridiculous as he wasn’t paying attention anyway. They probably knew he was autistic in the first two minutes but went ahead and tested him for other, additional deficits. I really don’t know what they were doing, other than satisfying themselves that he was an uneducable timebomb that would grow into a somewhat dangerous member of the family from whom we’d need to protect our other child.

 

Why do I believe they thought that? Because they told me so.They said Nick’s IQ was low, that if he developed any verbal language at all it would be purely functional. They said only kids with Aspergers have any hope of higher education.  Concentrate on my normal child, they advised, as though Nick were already a lost cause.

 

They also told me using applied behaviour analysis to help him would mean I trained him to ape the development of a neurotypical child, ignoring the fact he had a permanent, insurmountable disability that required the sensitive handling of one of their own professionals. They were wrong about all of this—time has proven as much.

 

Luckily, I am a tenacious, hard-headed, opinionated woman. I was even back then in my early thirties. While they were assessing Nick,  I was assessing them. I decided they had no ongoing interest in helping children with autism. The paediatrician was there to sort through children, discarding some, referring others. Nick was pretty much on the discard pile. Even in his best Winnie-the-Pooh jumper and shiny Clark’s shoes.

 

“Research shows ABA works,” I told them. “If you embark on an intensive programme and generalise what the child learns into lots of environments—”

 

They disagreed. They’d done their own research. It didn’t work. I might have considered one of their own professionals but they had no one available—and nothing was on offer except possibly a place for Nick in a special school nursery within the next six months. Ah, a special school nursery! Surely, that would help him, right?

 

Wrong. They didn’t really have great ambitions to help Nick. They wanted him to interact with other children, but those children had to be autistic, too, because Nick was autistic. Nursery school wasn’t really school and it wasn’t really play. It was just a place to put these kids.

 

Was “autistic” some special social group, a subset of society that required their own closed quarters? If he interacted with another child (which was unlikely at that time) and the other child didn’t respond (very likely), how did that help Nick?

 

It didn’t. It helped the local education authority tick a box or complete a file. Maybe they thought they were doing me a great favour by relieving me of my awkward child for a few hours a day. Who knows what it helped. Not my son, who needed help urgently, who was now missing milestones at a rate of knots even with the ABA (because neurotypical children develop faster than autistic kids playing catch-up), and whose social isolation and remoteness from the family had been decreasing since we began the intervention.

 

Which brings me to my third reason not to wait for a diagnosis: you don’t have the time. Your child doesn’t have the time. The brain remains plastic for his (or her) entire life, but the best time to encourage learning and to improve your child’s relationship and access to learning is as early as possible.
I carried on with the ABA. The local authority hated me, the wretched special needs coordinator hated me, a whole host of speech therapists who never taught him anything but arrived every few months to audit his progress, hated me. Or maybe not “hate”. They resented me and talked about me and disapproved of me and discouraged me.

 

Eventually, I began to hate them back. We’d squabble over little things. The special ed coordinator wanted me to teach him to communicate using PECS (picture exchange communication system) instead of words, even though he’d been picking up sounds and trying to make words since we began ABA.

 

“Why should he use pictures when he can talk?” I asked.

“PECS are very useful.”

“So is language.”

“PECS are language.”

She was right about that. PECS are a form of language. So is sign. So is screaming on the floor. But I like words.

“I mean verbal language,” I said.

“Why is it so important that he talk?” she demanded.

“Because he can.”

Did I need another reason?

 

Clearly, I was insane to teach this child through ABA when I was not a teaching professional nor a psychologist. I hired private ABA specialists (a couple of whom also hated me, but that is another story) and had them teach me what to do. I kept records and when Nick’s proress was so fast that the record-keeping became onerous, I dropped that.

 

By age 4 (1 year from being non-verbal), he was regularly speaking in sentences of 5-10 words. By then, I’d hired teenagers and was training them to interact with him for an hour or two at a time so I could have a break. We had a 4th birthday party, all those young therapists and Nick. He stood on the chair and blew out the candles. He smiled at all of them.

 

There were no children present. I wanted him to have friends—of course, I did. But what could I do? Other parents mostly avoided me just in case I asked if their child would like to come over to play or go out to an event with us. Nobody wanted to hang out with me. Why wasn’t my child in special school anyway? What was wrong with me? Was I in denial?

 

Yes, I was in denial. Or maybe I can beef up the description and say I had vision. If you are going to embark on a many-years project without any support from anybody you aren’t directly paying, you better have vision.

 

I remember that nursery at the hospital. We saw it on the winter morning in December when he received his diagnosis. Through the window on the door, under the laboratory-style lights that hummed rom the ceiling, there it was: a chaotic room of clearly very unwell children. Neorological abnormalities, chromosome abnormalities, bizarre ways of moving and standing. They weren’t playing or interacting with each other, but moved around one another a bit like how Richard Feynman describes atoms moving, like little particles “in perpetual motion, attracting each other when they are a little distance apart, but repelling upon being squeezed into one another.”

 

Any one of those children on their own would have presented a teacher or therapist with a world of possibilities and hope. Crowded together in the awful classroom on the ground floor of the hospital, they seemed doomed. How many months would go by before their parents moved them to yet another room? Then another? And at what point would these parents cotton onto the fact nobody was actually going to try to do very much for their child? They couldn’t, you see. There were too many of them. Anyway, it was more important to accept their condition, wasn’t it? Much better to accept it than improve upon it?

 

Not for me. All neurological conditions are very serious but some are far more profound. I know there are conditions about which I could do nothing. However, it seemed to me that to agree with the special ed people and the grossly incompetent paediatrician that Nick’s condition was already a done deal, that no significant progress could be made, was an assumption with little scientific backing. Yes, he was a non-verbal three-year old who swiped trains in front of his eyes instead of rolling them across the floor, who flapped his hands instead of waving, and who did not respond to a single word I said—not even his name. But he was only 3-years old. I could accept he was autistic, but not uneducable.

 

I didn’t wait for a diagnosis. When it arrived, I didn’t follow the advice of those who gave it. I am not telling any other parent how to raise their child. But what I will say is that in my experience, dedicated parents who teach their children are the best teachers around. You can do this—you may not see your child develop so well that he or she loses the diagnosis of autism (though I have seen this in some children). I’m not sure that should ever be a goal, as many autism traits are really quite useful if they aren’t accompanied by all sorts of impairments often associated with the condition.

 

However, in my experience a child with autism who is engaged and communicative is a far happier adult, with far more possibilities for his future.

 

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6 Comments

  • Reply
    Knut
    February 4, 2017 at 5:16 pm

    I agree; waiting for a definitive diagnosis misses the window-of-opportunity for preventing language regression, which typically occurs during the 2nd year. Cochlear implants also have to be given well before the 2nd birthday to prevent ID ( http://www.nature.com/articles/tp2013124 ).

    • Reply
      Marti
      February 4, 2017 at 8:23 pm

      Hi Knut. Thank you for the comment. I remember being shaky and wanting someone to say to me that my son wasn’t autistic, not to worry, not to fear. It would have been easy to get me to wait on an intervention, but I was lucky. Someone I’ve never met and have never since spoken with (I wish I could recall his name!) had been an early adopter of ABA (probably really crappy old-fashioned ABA, but never mind). He said not to waste a minute. “Do this,” he insisted. “It works.” And it does work…or gets you in the right direction anyway from which you can depart or add additional interventions if necessary. I’m not selling ABA, but I am selling doing a LOT soon to say you having to do even more later. 🙂

      • Reply
        Knut
        February 4, 2017 at 10:49 pm

        Hi Marti, from cochlear implant, children have to start speaking well before the 2nd birthday. I don’t think ABA can be effective in the early 2nd year of life. From our genetics results, “mutism” is caused by “stranger anxiety” triggering (abdominal?) migraines. Hence, we may need to prevent those migraines so that children learn enough language during that window-of-opportunity to benefit later (from ~3 years of age?) from ABA.
        Does this make sense to you?
        Knut

        • Reply
          Marti
          February 7, 2017 at 8:47 am

          Hi Knut, I’m going to speculate here, as I really don’t know. However, if one were to engage in a type of ABA (that is a kind of contingency teaching) with a child as young as 13-23 months, it would have to be so modified as to hardly look like ABA, as we know it. I’d have to know exactly what the next step in development should look like and become an expert at that very moment in my child’s life. We started at age 3 and two months. To be honest, the ABA we used for Nick was so natural in its approach, it would be difficult for a layperson watching to pick out the contingency. For example, let’s say I am trying to get him to respond to me in a room–that’s all. So, I get a terrifically motivating (for him!) activity like blowing bubbles through a wand (I’m hoping you know what I’m talking about). So, I dip the wand in the holder, prepare to blow a bubble, Nick looks my direction or comes up to me or does anything to show he’s engaged, and the bubble is blown. He then enjoys the reward (bubbles!) and we start again. I then up the stakes. Maybe I try saying his name. I say, “Nick!”, he looks around, and the bubbles are blown. I can move any direction–and if I am a good therapist I am aware of this. I can continue with the receptive language, or go for a non-verbal communication. In the latter case, I’d say, “Nick!” (he turns toward me). “Want bubbles?” I now nod my head vigorously, hoping he does anything like nodding his head. If he shows even the slightest movement toward nodding, I blow the bubbles. I can now increase the nodding (shaping the response until he’s giving a proper nod and not just the suggestion for one), or I could decide to move to another desired response (saying “yes!”). That’s a bit of a leap, but I’d get there eventually….I could, of course, decide to get a cookie and say, “Nick!” and he turns around. “Want this!?” and hold up the cookie. He then nods. So I work on nodding to different things he might want….and so it goes…..

      • Reply
        Knut
        February 5, 2017 at 12:24 am

        One more point: In a condition as diverse as autism, exceptions are the rule. For some children, like Nick, age 3 may not yet be too late. Some may have talked, but only with sheep, dogs, and horses. Whatever it was, I’m happy that Nick became “high functional”, after very intensive behavioral intervention. Still, identifying risk factors earlier, in the US from the 9-month well-child visit, and protecting language development from 12 months would likely also help with development of social skills.

        • Reply
          Marti
          February 7, 2017 at 8:49 am

          He had no verbal language at all and apparently very little (maybe no) receptive language and began therapy at about 38 months. We weren’t even good at it. Nick didn’t talk to anything…people or otherwise.

          Agree with you about identifying risk factors early! Anyway, what do we have to lose? If the child is absolutely fine, all you’ve done is help enhance their learning. And if you are doing fun stuff in the intervention (and you should always be doing fun stuff!) then you can’t lose. 🙂

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