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Autism 'shame and blame' culture has to end

Aaisha poses with her mother Pam as part of a campaign to raise awareness of autism Photo: Pam Malhi

Autism is a life long condition. It's one of the most heartbreaking journeys a parent can face. Autism within the Asian community is even harder as we have a tendency to not discuss these issues.

We don't want to admit our child needs help or has special needs. We feel embarrassed or ashamed that our child will be frowned upon. We feel we will blamed for our child's condition or as many will say it's a sin of their past life.

My eldest daughter Aaisha is almost 19. When she was nine months old, we realised there were developmental problems. At 18 months, we were told it was severe global development delay, with learning difficulties and she was showing all the signs for ASD (Autism Spectrum Disorder). At the age of three, she was diagnosed as autistic.

Having spent the last 18 years living with autism, one of the things that never ceases to amaze me is the lack of understanding about Autism within the Asian community.

A new report for BAME (Black, Asian & Minority Ethnic) communities by the National Autistic Society highlights the need for more support and resources within these communities. It also calls for the 'shame and blame' culture to end within these communities. As a family living with Autism, my children and I went along to the House of Commons to reinforce and support this hugely important report.

We need to support these families and have a support network in place that will help, as highlighted by the report.

Aaisha Malhi was diagnosed with autism when she was 3 Credit: Pam Malhi

I won’t hide my daughter away, simply because society feels uncomfortable with her body movements, the sounds she makes, her rocking or even her meltdowns. She has autism and this is not her fault!! Her journey through life is hard enough without being pointed at, stared at or others thinking she has some kind of mental illness.

Pam and her family support a new report which says people from ethnic minority communities need to be more aware of autism Credit: Pam Malhi

Our journey is one of passion, one of faith, one of hope, one of never giving up, one of defining the odds against us. I’d be lying if I said I don’t feel pain. I’d be lying if I said it gets easier. I’d be lying if I said the meltdowns don’t bother me - they break my heart every time. I feel so helpless when I can’t comfort my child. I’d be lying if I said I’m used to it. I’d be lying if I said it’s ok. I’d be lying if I said I like Autism.

I’m human, I’m her mother.

But the truth is this special little girl changed my life completely. She showed me anything is possible with hope and faith. She made the path and I followed it. She gave me more than I could ever give her. She is the true definition of unconditional love. She’s my true angel, my very own gift from God.

Our journey continues every day. We get through the bad days with faith, we laugh through the good days with hope. I’ll never give up on my daughter.

We still have targets to reach, barriers to break and progress to make.

The Malhi family Credit: Pam Malhi

I’m trying to make a difference for every child with autism, not just my daughter. I’ve embraced autism and accepted that it’s a huge part of our life.

I would truly like to see my community stand up and support families and children who are along the spectrum. Our gurdwaras, our mosques, our temples, our churches, our community centres and, most of all, our people need to play a huge part in making this happen.

Together we can truly make a difference for our children.

My home city of Leicester has been legendary in its support for my campaign. I can’t make this change alone but with my city and many others across the UK backing campaigners like me, we can and we will change this. We will have acceptance for each and every person living with autism. This is the hope my family and I have.

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