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Life On the Spectrum

Meet Chaim

Disclaimer: Information provided is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks Canada does not provide medical or legal advice or services. Rather, Autism Speaks Canada provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks Canada has not validated and is not responsible for any information, events, or services provided by third parties.

Meet Chaim

Chaim and Rachel

Can you tell us about Chaim’s diagnosis?

Chaim was born prematurely and was developmentally delayed. A friend of ours also has a child with autism recommended getting him looked at and so I contacted Children’s Treatment Network for an evaluation. The waiting list at the time was quote long, I believe two years. When he was 4 years old, we went in for the evaluation and got the diagnosis.  Obviously putting a name to symptoms is important to families. For us it helped us cope better and answered many questions we had.

What happened after the diagnosis?

After many years of consultations with specialists, and voluntarily joining research studies Chaim also received a diagnosis of Wiedemann-Steiner Syndrome (WSS) of which a huge proportion of individuals have an autism diagnosis but tend to be more social, happy, and less rigid.

How did you get connected with the MSSNG program?  What drove you to participate?

My husband and I were always actively advocating for our child, contacting specialists, attending conferences, and joining research studies. Along our journey we went to many hospitals I believe I saw an ad for MSSNG in an elevator actually!

Can you describe your family’s experience working with researchers at MSSNG?

They are my favorite people. The kindest people ever. What was so nice is that they helped de-mystify Chaim’s condition and were always patiently answering my questions.

How did MSSNG impact Chaim and your family?

How does this knowledge help you connect Chaim with better care? The WSS diagnosis for us was more impactful than the original ASD diagnosis because it explained more about his condition and helped fill in the gaps. It also introduced us to a whole new world of children and adults who have WSS. In terms of connecting to his care, it helped us see how he differs from typical ASD children and focus his treatment based on his specific needs.

How did you feel when you initially received the MSSNG diagnosis, and how do you feel about your participation in the program looking back now?

I am a person of faith and don’t believe in coincidence, so I am grateful to find the wonderful MSSNG team. We were always willing participants, trying to help the medical community in any way possible, never thinking to get anything in return. However, getting this diagnosis helped our overall quality of life.

What advice would you give to other families facing similar circumstances?

I would say that parents are the number one advocates for children. While your medical team is there to support you, they don’t see the day-to-day. If you have a hunch about something, seek it out! Find other opinions and specialists. Most importantly, join research studies to help the medical community help others – and who knows – maybe you’ll get something in return!

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Disclaimer: Information provided is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks Canada does not provide medical or legal advice or services. Rather, Autism Speaks Canada provides general information about autism as a service to the community. The information provided on our website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider and does not replace the advice of medical, legal or educational professionals. Autism Speaks Canada has not validated and is not responsible for any information, events, or services provided by third parties.