I am rather an odd person, I’ve embraced this fact about me and am not afraid of sharing it. I love data. I love studies. I really love studies of studies, where they look back at all the other studies and crunch lots of numbers. I love numbers and spreadsheets and data.
Michael has been getting amazing results at his ABA therapy lately and learning so much that I’m sometimes worried I’ll run out of things to teach him and he won’t need me anymore. Maybe go to Harvard early or something. This is what it should be like after a while with intensive early intervention, and it is worth finding the right fit for your child because the results are truly amazing.
This is what the decision should look like:
Step 1: Learn About Early Intervention
There are so many different methods available to help you with your child. Whichever one you use, make sure it is one that is backed up by solid research and that you do it for at least 25 hours a week. The Raising Children Network has a great guide to therapies that you should have a look at. They list all the main ones in alphabetical order with a price and a research rating – try to go for the ones with an ‘established’ or ‘promising’ rating.
To help you these are links to information about the main promising types of therapies used in early intervention:
- Applied Behaviour Analysis (ABA) (Established)
- Manual Signing (Promising)
- Early Start Denver Model (Promising)
- Developmental Social-Pragmatic Model (Promising)
- DIR/Floortime Model (Promising)
- Discrete Trial Training (Established)
- Functional Communication Training (Established)
- Incidental Teaching (Established)
- Pivotal Response Training (Established)
- Positive Behaviour Support (Established)
- Picture Exchange Communication System (PECS) (Established)
- Relationship Development Intervention (RDI) (Promising)
- Social Stories (Established)
- TEACCH Method (Promising) (Not available in Australia)
Which particular method is best for you will depend entirely on your child. There will be some trial and error, and some methods may be either unavailable to you or be so far away as to be almost impossible to implement. Some aren’t therapies but rather techniques used within therapies.
As a general guide, the ‘relationship’ based therapies such as RDI or DIR/Floortime have had better results with higher functioning children who need to work on social skills. Methods like ABA or the Early Start Denver Model can be personalised for a child of any level but ABA is not as great at things like social skills. On the other hand they are for gaining basic skills and for teaching communication. But these are wild generalisations and you should try the methods one at a time until you find one that is right for you. I would start with the Established ones and then move on to Promising but they are all quite good.
Step 2: Choose Your Provider Carefully
The psychologist/supervisor/occupational therapist or whoever you choose to provide your little one’s therapy will need to be educated about autism, experienced in the type of therapy you chose, and you must be comfortable with them.
They must also get on well with your little one but sometimes this might take months to achieve (my son didn’t respond to his therapists for a couple of months, but he didn’t respond to anyone except me at that stage).
They should listen to you and your concerns. You should be involved in the therapy. But they should also be able to guide you and tell you what you could work on next – if they simply ask you what you think your child needs to learn and that’s it, this person is not going to be a big help.
They must know how to get his/her attention and must have strategies for dealing with any problem behaviours. If they are simply running around after them talking at a thousand words per minute, back away slowly. If they seem impatient, abusive, if they physically threaten your child in any way – run away quickly (this should go without saying, but I’ve heard stories…). Much of the success of your child in early intervention may be more about how good the particular therapists are, rather than the approach used – I have heard of horrible ABA therapists, although everyone at the Lizard Centre where my son goes is very qualified and generally wonderful. Use your judgment.
Step 3: Try each early intervention type for at least three-six months.
I’m sure most parents, like me, have about 24 hours in a day. Give or take. Of those a baby will sleep for about 12-14 (wouldn’t that be great?!) and there’s breakfast, lunch, dinner, bath time, and time allocated by baby just for driving you insane. For early intervention to work it needs to be intensive – we do about five-six hours per day with our bub. So there is no time to waste in a day. It also needs to be consistent. You cannot have one person teaching him one way and another person a different way, because life is confusing enough.
This is why you must, especially at the beginning, choose just ONE early intervention method and stick with it for AT LEAST THREE-SIX MONTHS. It’s very important to just stick with one thing because otherwise you do not know what is helping her. Is she getting better because of Floortime or because of ABA? Is that Gluten/Casein free diet making a difference or is it the time with the Occupational Therapist and Speech Therapy? If you don’t know then you will have to do everything all the time and that is not sustainable, and could bankrupt Bill Gates (well, probably not, but you get my point). Or you will jump from therapy to therapy every few weeks, get exhausted, confuse your little one, and have very bad results.
If you do try an experimental therapy such as a special diet make sure that you are also doing an established/promising program. I would do an established program for at least six months on its own though, then introduce the special diet and see if there is any additional improvement. Then after another six months try to remove the diet and see if the improvement goes.
And don’t judge the intervention approach too quickly. A lot of them seem to be doing nothing for weeks, or doing things that might not make sense to you. Watching Michael in ABA therapy at the start I thought there’s no way anyone can learn anything using that method – until he started to make his great progress. But if you still feel that way after six months, it might be time to try something else.
Step 3: Never do a therapy just for the sake of doing something.
Cutting out huge amounts of food can mean that your child will actually become intolerant and will never be able to have it in the future. Missing vitamins are not good for learning/growing brains. If your naturopath/nutritionist recommends something ask your doctor about it before you try it. It may be wonderful. But the evidence behind many alternative treatments is incredibly tenuous and the amount of money you may spend on it is potentially huge. You can still use them (I use melatonin for my son, which is an alternative therapy) just do it under the supervision of your doctor/paediatrician/someone that went to university for five years or more and knows what controlled multilevel regression analysis is (don’t ask).
Step 4: Ignore anecdotal evidence
This is so important. You must understand that we, as human beings, are really really bad at observing the world around us. We don’t observe so much as see exactly what we want to see. We see three red cars when we go out driving and we decide that most cars must be red – even though these may be the only red cars in the city. So listen to what other parents tell you and look it up but do not make decisions on the basis of this!
To illustrate: I was chatting to a dad at my son’s therapy centre, and he was talking about the gluten free diet his daughter was on. He said ‘We went on holiday recently and she had to have some food with gluten in it, when we were at a restaurant. A few times. She behaved so much worse that whole trip. Then as soon as we got home and resumed the diet, she got so much better!’
This man, while he loves his daughter very much, is wrong. Gluten stays in your bloodstream for about 6 months from when you last consume it. So if his daughter’s behaviour improved as soon as they got back, it was not the gluten that caused it to go bad in the first place. The fact that she was on holiday though, in unfamiliar circumstances, seeing new places every day, might have had something to do with it. Now, possibly this diet is still great and it’s worth checking out – go see your paediatrician about it. But you can see that anecdotal evidence from a parent , on its own, can be very unreliable.
Step 5: Measure the results
Whatever therapy you have chosen, you have to check that it’s actually working. Don’t listen to grandma when she says ‘oh, he looks so much better! I swear he looked at me so many times today!’ Count everything. If your therapist is working on eye contact, count how many times your baby makes eye contact in the same half an hour period every day. Write it down. If you don’t have that as a goal, choose something else measureable – how long she spends playing with a new toy she’s learning, how many words she’s understanding, how long he can spend playing near his cousins before he starts to run away and cry. Measure and test because if your little one is spending six months doing a therapy and there is no progress, it may be time to try a different therapy. And remember don’t go with your ‘gut’ – I guarantee that your ‘gut’ will see exactly five times more improvements and skills than actually exist.
The best way to do this is to book your child into an assessment centre about six months after you start therapy, so you see how much they can do in a new setting in front of strangers. If it’s absolutely nothing, it’s better to know now than at a later stage when they’re going to school. Make sure that you schedule some grieving time after the assessment centre results come in – usually two-five mini breakdowns is fine, after the initial one.
Really though whichever therapy you use should have built in assessments. The therapist/provider you use should have a process every year or so to check what progress your child has made in all the different areas you are trying to address – if they don’t measure progress then I would change therapists.
Step 7: Spread the load – hire therapists and involve your family
It amazes me, every time I need to add a therapist to Michael’s team, how many amazing people are out there that are willing to spend hours patiently helping him learn to do jigsaw puzzles. The personality is the big thing here – you want someone that has patience, is great with little kids, has massive amounts of energy, and gets ridiculously excited when a small child waves to them.
The most important thing about a therapist is that they know something about the therapy you want to do (you’d be surprised) and that they have huge, enormous, unlimited amounts of patience. A Buddhist monk maybe? Energy is also great, as well as a love of children. It also helps if they’re broke and have a pretty flexible schedule, because when your little one decides to nap 1-3 instead of 12-2 you need the therapist to be able to come and leave later.
I have met many parents who have told me they do not have the patience and energy to do therapy with their kids, and that is ok. It shows just how rare these qualities can be, and how important it is to spread the load. Most human beings just can’t physically manage 30 hours per week of therapy themselves, as well as doing all the other little things parents do for their kids. Sometimes you’re just in shock for the first six months and then can slot yourself in once your little one is getting the hang of therapy as a concept. It is a big help if you can do some of it yourself. Some kids don’t even need that much – but it is important to try to get someone to help you so they can learn to generalize their skills with other people. It may mean mortgaging your house but there is government support available if you ask, and it is generally only for a couple of years.
It is also a great relationship builder. If your son/daughter ignores her grandparents, or doesn’t really notice your partner, it is great to involve them in the therapy. It may take months of really heavy effort but it can pay off so much. One of the great rewards in life is seeing a child learn and developing a bond with them. Therapy cuddles are the best.
Step 8: Just keep trying
I think the hardest thing about teaching a child on the spectrum is that, often, it’s not as immediately rewarding as teaching other children can be. I have some favourite little cousins/nephews/nieces and little kids are like sponges! You give a little 10 month old baby a maraca and within a few minutes he’s shaking it and laughing. So cute! With many children with autism it will take many, many months to teach them to hold that maraca. It took me months to teach Michael to hold it the right way, then to shake it. And there was very little laughing. He enjoyed the prize I would give him for trying, but the process itself interested him as much as my Administrative Law lectures used to fascinate me.
But just keep trying. She can learn that ring stacker. It may take ten attempts a day, seven days a week, for six months (it did with Michael) but she will get there. Just break it down into steps, don’t expect too much at once, and give little rewards for every single attempt no matter how small.