As part of our support program for parents after an autism diagnosis, we teach how to read the diagnosis documents. Beyond the rights and benefits that come with a diagnosis document, it gives us very important tools for child care.
One of the hardest moments in my life was receiving Dolev’s autism diagnosis. Although I anticipated it, being told by the diagnosing team was shocking.
The psychologist was trying to explain the diagnosis and its consequences. However, the information wasn’t absorbed properly in that situation. The emotional difficulty of the situation made it impossible.
We realized after a child is diagnosed with autism, you also need to learn how to read the diagnosis.
In this article, we will talk about reading the diagnosis document and how to use the information in it.
How to Read the Different Sections of an Autism Diagnosis
The autsim diagnosis will be divided into sections which are usually written in the same order. Some changes may occur based on an examiner’s preferences. But, mostly it will look the same:
First Section – Technical Details
This Section will detail technical details such as:
- the age of the child
- the age of the parents
- who makes up the family
- the place of the child.
Second Section – Medical History
The second section will contain information from the medical history such as:
- details about the period of childhood and infancy
- details about the birth
- eating patterns from infancy to that point
- a description of the child’s sleeping abilities
- details of the child’s schedule and educational framework.
Third Section – Reason for Referral
In the third section you will see here a description of the reason why you came to the diagnosis:
- Gross and fine motor skills
- verbal ability
- sensory regulation according to the description of the parents or an initial observation of the child
- General behavior and abnormal behavior.
- What was written in the kindergarten report.
Fourth Section – Examiner’s impression during the test
Next is the fourth section – the examiner’s impression during the test. You already know some things, and might surprise you to read They will describe:
- How the child behaved throughout the test
- How he responded to the instructions
- What he did and in what way
- What he clearly enjoyed or did not enjoy
- How he responded to the examiner and the parent
Fifth Section – Diagnostic tools
Section five: the diagnostic tools. These are the names of the methods used to perform the test.
The tools may vary between children as the examiner’s have some choices. It is also affected by the child’s age.
However, as a rule, an autism diagnosis needs to incorporate the ADOS tool as required by the DSM-5.
Sixth Section – Results
Section Six: Results – the conclusions according to the diagnostic tools.
Here we will find all the data according to which the level of functioning in various fields is determined.
This is the most important part of the diagnosis for the parents and caretakers. According to this part, you will be able to make an initial work plan.
Seventh Section – Recommendations
Section Seven: Recommendations.
Follow your examiner’s recommendations written at the end of the autism diagnosis. This will give you something tangible to work on, which will prevent you from spiraling into depression.
It is important to follow through with the recommendations so that your child can receive the best care that can be provided in your country.
In Israel, there are many benefits that children with autism can claim. If you are not sure how to get them, follow the instructions in our “how-to exaust your rights in Israel” manual.
More on the Results Section
Let’s dig deeper into the results section. we will see a breakdown of the examiner’s observations, according to the tools used.
There may be a reference to the paramedical staff’s observations. (If there were any on the diagnostic staff).
These are the parts you can expect to see in an autism diagnosis:
- Visual perception
- Gross/fine motor skills
- Communication skills: comprehension, expression, use of verbal and non-verbal communication, social interaction and reciprocity, play, behaviors, limitations, and repetition.
There will be a brief explanation of what was observed, performance ability and grade. The grade may be represented in functional versus chronological age or a number. The difference is in the diagnostic tools used.
Scores might be represented in a table.
In adult children from the age of 3, a DQ index may appear. The DQ index ranges from 0 (abnormal) to 100 (normal development for age). This index describes function and when it is lower than 49, it means very low function.
The parents’ description of behavior at home will usually appear next on the report. Then the teacher’s, and paramedical staff’s reports. (Order may change)
How to Read an Autism Diagnosis?
- Print a copy of the document
- Start by reading everything from beginning to end.
- Highlight each section and the result in one color.
- In a different color, highlight everything the child was unable to do or had difficulty with. When you go to therapists you will be clear about the difficulties and thus you can direct treatment.
- Highlight the recommendations. What type of framework was recommended? Which follow-up tests were recommended?
Keep this copy for yourself. Use it to focus on what needs to get done.
Now, create two lists:
The first list is for the areas in which your child has difficulty. Sort them into sections according to paramedical professions:
- Speech therapist – communication goals.
- Occupational clinic – performance and social interaction.
- Physical therapy – muscle strengthening and fine or gross motor skill
- Case manager – this should be you, but at the beginning, an experienced professional can be an excellent resource. The case manager guides the parent and other therapists toward specific goals.
The second is the list of recommendations. It will be divided into medical inquiries, educational institutions, and types of recommended treatments.
Using the Information We Collected
After we have read and organized the information, we need to prepare a plan of action, and implement it.
You have the option a community social worker can help you. In Israel this is available at the HMOs. Ask for a list of recommended caregivers to interview and hire. Discuss appropriate educational frameworks in your area.
If you prefer and can afford it, you can build a home schooling program. Recruit professionals yourself or contact centers working with a certain method to receive the relevant therapists.
Don’t forget to follow-up on the child’s progress.
At the end of the school year, ask the teacher to write a functional report, (if she doesn’t do it anyways). Using the teacher’s report and the autism diagnosis to make a comparison. Where has your child progressed and how much? Where hasn’t he?
This way you will know what needs to be strengthened or not. From there, you can adjust the plan and set new goals.
Adapted measurement tools for parent reporting can also be used to accurately measure progress. You can use the ATEC tool online to get a measurable score.
Whether receiving the autism diagnosis was difficult for you or not, that’s okay. It’s okay if the information given to you is not fully absorbed that day.
Now is the time for action.
Print a copy of the diagnosis. Follow the instructions in the article. Prepared a plan of action.
You now have new tools to help your child overcome their challenges more effectively.
If you’re not sure how to proceed, or it’s just too overwhelming, you can contact us to get more information about our parental guidance program. You don’t have to learn everything by yourself from scratch. That’s what experienced parent guides are for.
You can also use our Facebook community. Consult with other parents or search for additional professionals.
Remember that autism does not mean that the child is stupid or will be able to function at all. There are people with autism who have reached impressive achievements.
Our job is to lead our children to independence according to their ability.
Teach them to get dressed and shower independently. Teach the girls to be independent in their feminine hygiene.
It may take more effort than we would like to potty train, or teach them to sleep, but it is possible. The diagnosis gives us more tools to understand how to approach these challenges.
You should keep all these reports in one place so that you have an estimate of progress. Scan them and save them in the cloud and on your computer.
Hope this helps. I wish someone had arranged this for me when my eldest was first diagnosed.
Shira Reiner – developmental nurse and parent guide
It takes a village to raise a child
I recommend looking for support groups with experienced special needs parents. For this purpose, we have opened another Facebook group for parenting skills. This is in addition to our Stem cell therapy support group for families looking for information about the treatment based on umbilical cord blood or stem cells. Both of these groups are mainly for Hebrew speakers but you are welcome to join if you think it can benefit you.
For those who are not active on Facebook, join our silent WhatsApp group, where you will receive notifications about events we organize. Again most of these will be in Hebrew, but you can catch the odd English lectures. You can find recordings of these on our youtube channel.
There are many experienced parents in social media groups. You are also welcome to contact us of course for parental guidance or any of our other services.
The Autism Essentials Israel blog is written by Hagai and Shira Reiner, two parents of children with special needs – autism, epilepsy, and more. We focus on the essentials of raising special needs children in Israel, but much of our content will be relevant globally
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