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6 Key Strategies I Learned on the Road to My Child's Autism Diagnosis

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Our journey to diagnosis for my son who is 6 and diagnosed with autism spectrum disorder began when he was around 3 years old. His autism was not so plain to see, as he carries multiple diagnoses making him complex.

I know his complexities are not unique.

I have met many parents throughout this journey with similar dual diagnoses, similar fights for an accurate diagnosis, and similar pain when you are told “we aren’t sure, wait just a little longer.” Which means “wait just a little longer” for services, for support and for answers.

Through this journey I have learned six key strategies I want to share with other families just starting their journey, or still battling in the trenches.

1. Write everything down. Everything. What I mean is, you scribble down every single behavior, every bit of rigidity, every difference you see. Keep note of every meltdown, their triggers, their response to change, foods, clothing… everything. I can’t tell you how many hours I’ve spent and how many stacks of paper I have of just notes. This is now your power. This is something you can take with you to every appointment, every assessment, something you can look back on and feel strength and certainty in your words when discussing diagnosis with the person in the white coat in front of you.

2. Do not give up. You know your child best. You know them from top to bottom, inside and outside. If your child does well in one assessment, and you leave there feeling defeated because that is not what you see on a daily basis… say so! A sit down for one hour with a stranger cannot deliver what you know about your own child.

3. Seek multiple opinions. I cannot stress this part enough. Too often we feel intimidated by specialists, therapists or doctors, but what we must understand is they are human, too. If you feel your doctor isn’t seeing the whole picture, seek another opinion.

4. Do not give up. You are your child’s voice, their advocate and their protector. There will be days when you begin to question yourself, but never give up on seeking answers.

5. Ask for copies of assessments and reports. It is your right to have access to every single copy of assessment or report. When the specialist was finished, I would request a copy, go through it myself and highlight parts of the report I felt were misinterpreted. I would then go back and explain what I thought, and the specialist would say, “Oh, yes I think you are correct.” It doesn’t hurt anyone’s feelings to question, or highlight another possibility.

6. Never give up. Whether you are searching for an autism diagnosis, Tourette syndrome diagnosis or ADHD diagnosis, you will always know your child best. Never lose hope in advocating for your child.

I hope this helps you climb this sometimes uphill battle.

Originally published: July 20, 2018
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