One of the most common questions we are asked is: how did you know your boys were autistic? Perhaps you have noticed something unusual in your kid’s behavior and you are asking yourselves “does my child has autism?” Maybe, like Hagai, you searched online in search of an answer to why your child behaves in a certain way. In this post is a detailed diagnosis preparation guide. Some tips to help you get organized and prepare for a diagnosis.
** This post is written with Israeli institutions and protocols in mind. Some of the links will lead to Hebrew articles. These posts will be translated with time **
How to start when you think your child might have autism
Occasionally, someone we know tells us about their kid’s abnormal behavior, and asks us if their child has autism. We see this question repeated in Facebook groups. We are asked this by parents who turn to us for guidance.
Because we are parents of diagnosed children, we are perceived as having the ability to diagnose. Parents don’t diagnose children.
Even if we could, it is impossible to diagnosis a child based on the reporting of a few individual behaviors.
So what can be done? How do you know if you need to take a child for a diagnosis? Here are the guidelines:
The first rule, is if you have any doubts, follow that feeling and find out. The process starts at home. If you get a strong feeling that there is something off, open an observation routine.
Initial observations before asking professionals for an autism diagnosis
1. Get yourself a developmental milestone checklist, sorted by age, such as this CDC list.
2. Get yourself a notebook or a notes app for your phone.
3. Sit in front of your child as he is playing with himself and with others.
4. Write down any behaviors that seemed off to you. Take videos if you can. Observe overtime, at least two weeks.
5. Compare your observations and the milestone list. Is your child missing any milestones? Is the gap between your observations and the age group significant?
Approaching your pediatrician for HMO diagnosis
If your observations led you to believe there is a problem, approach your regular pediatrician, and share your findings. If your pediatrician is not attentive, it’s okay to get a second opinion.
The HMO’s in Israel diagnose children up to the age of 6, with the pediatrician’s referral. They are also committed to help you find out who can help you get the diagnosis, even if they won’t be the ones handling it.
If your child is five years old, don’t delay. Start the process now. It’s much harder to get it done later.
Private diagnosis
If your child has passed the age of 6, or if the HMO doesn’t have close dates for diagnosis, and you want to get quick answers, you will need to approach a private institute. It’s best to ask around Facebook autism forums to get a good recommendation.
Some institutes work with the HMO, or with private health insurance companies. Private diagnosis might be expensive, so it’s important to find out in advance what your options are.
What to expect at the beginning of the process
The process of getting to the diagnosis, may take a long time. With younger children it could be longer, about 6 months, give or take.
Additional factors that extend the time to diagnosis: You will be asked to rule out several physiological factors that might cause delays. For example, if your child does not turn his head when you call his name, you will need to rule out a hearing problem. You may need a eye examination, an EEG to rule out epilepsy, a brain MRI to rule out a space occupying mass.
Depending on your HMO, the lines may be long and far away. In the meantime, you might be offered non-medical treatments such as speech therapy or occupational therapy. The hope is to minimize the developmental gaps that you observed.
However, it is important not too keep your suspicions bottled up. Try to push for diagnosis as early as possible. It will make it easier to get recognition and treatments. Early treatment has higher value than late.
What does the autism diagnosis look like
At the diagnostic institute, whether through the HMO or a private institute, you will usually be handled by a number of professionals. At the very least, by a developmental psychologist, and a developmental physician or neurologist.
You may also meet a speech therapist, physiotherapist, and occupational therapist.
In most of the sessions, the child will be asked to play freely or perform tasks according to a structured test. You will meet the staff members without your child, to give your report. In addition, you will need to provide a behavioral report from the educational framework (ask the institute to give you a form, to be filled out by the kindergarten teacher / caregiver).
The Diagnosis needs to follow a standard called DSM5 , in order to be considered valid in Israel (and other countries), and in order to get your child recognized by Israel, so he can get his rights.
After your child meets all the necessary professionals, you will get an appointment, to receive the results of the diagnosis.
It is important to note that many other developmental problems may arise in the diagnostic process. You may have thought it was one type of problem, but it could be a different diagnosis. You may also leave without a diagnosis, but with a request to arrive at an older age for reassessment.
Diagnosis summary
After completing all the meetings at the diagnostic institute, you will receive a summons without the child. In this session you will receive the final diagnosis in writing and orally. At best, with an in-depth explanation of what is written, and what to do next.
“Does my child have autism”, is is a very emotionally difficult question. This is a very hard day, even for those who understand in advance what to expect, and even if it is not what you thought you would hear. Ask to return to them after a week or two so that they can explain the diagnosis again. You should also read our post about rereading the diagnosis after some time.
How to handle diagnosis day
Take the day off
The diagnosis meeting only takes about an hour, but clear your schedule for the day. If you are given better news than you expected, you can change your plans, and go about your business. If you receive harsh news, you will need time to digest. Even if you are told what you thought you will hear, it is still very hard to digest. (Read Shira’s or Hagai’s story from the experience)
Take extra copies
Make sure that the diagnosis is written up properly, and that there is coordination between all the different parts that the staff wrote together. When the child is high function, sometimes one staff member will call him confusing, while the other will say it’s very clear. Eventually they have to come to a conclusion together, make sure they wrote the conclusion in a clear manner.
On the day of my third child’s diagnosis, I asked the neurologist, does my child have autism. She was very clear that there is no confusion, but the psychologist said she was not so sure. The psychologist conceded to write him up as autistic, but she withheld a written diagnosis, and we had to pressure the institute to pressure her to hand over the corrected document.
Don’t leave documents behind
Before you leave the place, make sure you have everything. At the least, a report from the developmental doctor or neurologist, and a report from the psychologist. Without these you will not be able to submit documents, to receive the rights of the child. Leave with an additional copy of the documents.(Read our post on what to do after the diagnosis)
Schedule follow ups
Come out with a referral to get parent counseling, right from the diagnosis. Make an appointment with the HMO social worker to find out your child’s rights. Make sure they explain to you what the recommendations are for your child. If my child does have autism, I need to know what I should do to help him.
Understanding the diagnosis
If you still feel that they have not properly explained what is written in the diagnosis, or its meaning for you and the child, ask to institute see the diagnoses again, about a week or two later, to get the explanation again.
Alternatively, private parental guidance can be arranged outside of the diagnosing institute, which will help you put things in order, digest, and plan the next steps. Take a look at the services we offer, to help you decide what will help you.
Why should I even ask myself if my child has autism
The day of diagnosis is an unpleasant event, but important on the path for treatment for your children. Remember that even if your children have an official diagnosis, they will still remain the same children. Your children are the same before and after you received a piece of paper, but now you will have more tools to understand and help them. The diagnosis can help you understand what motivates them to behave in a certain way. It helps you understand how your child can be helped to overcome certain difficulties, such as a sensory regulation problem. The diagnosis allows you to receive rights from the state, such as a pension, a tax deduction and more. The diagnosis gives you rights from your HMO and/or private health insurance (for this purpose, you should purchase comprehensive and extended medical insurance before starting the process).
It is recommended to go for diagnosis as early as possible, to be able to help your child more effectively.
On the other side of the coin, if we ignore our gut feeling, or what others around us are pointing at, we will be abusing our children. If I don’t ask myself does my child have autism, I also choose to ignore his needs. This will leave both of us frustrated. I will be denying my children the best resources without answering that question. At the very least, if the child is neurotypical, the doubts that were eating me up from the inside can never be answered by a simple observation and comparison to the benchmark list.
I wish you you an easy process and good results,
Shira
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