‘I knew AS SOON as he walked into the room.’ People think he’s possessed.’: Mom advocates for son with nonverbal autism, ‘Love needs no words’

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“Sami is 9 years old and the youngest of three siblings. He is nonverbal and has a diagnosis of autism and learning disability. He is the baby of the family, a cheeky, loving boy. He loves his older brother and sister. He absolutely loves water and going swimming at school, and he also loves bubbles and ripping up paper and tissue paper into small pieces. He is minion mad, loves watching the Minions movie and Despicable Me 1, 2, and 3, also loves watching cars crushing things on YouTube on repeat and never gets bored of them. He never sits, is always on the go, loves jumping on his peanut ball, and also loves trampolines. His favorite movies are Minions, Despicable Me, Madagascar, The Croods, Monsters Inc., and Wreck-It Ralph.

A boy with nonverbal autism stands against a wall holding a nametag
Courtesy of Zainab Siddqiui

When Sami was around two years old, we noticed he was very different compared to his siblings. He didn’t have any interest in toys, he loved to play with strings and wires, didn’t make eye contact, would not respond to his name—he used to be happy and content in his own world. He would only eat Weetabix for breakfast, lunch, and dinner, and would never try any new foods. He would just cry and cry and wouldn’t be able to communicate what he wanted. He covered his ears a lot, would refuse to walk, and when outside, he used to get excited looking at the car wheels turning.

A baby boy sits wearing a striped sweater
Courtesy of Zainab Siddqiui
A toddler with nonverbal autism sits on the floor
Courtesy of Zainab Siddqiui

If I am honest, at that time I didn’t know much about autism at all. I never had come across it at all. I remember talking to my friend at the time, as her kid was the same age as Sami. She had suspected her son may be Autistic, and as I was telling her about Sami, she said I should have a look online and do an online questionnaire. I was a bit reluctant at first, but I knew Sami was different, so I decided to search for autism online and did numerous online tests. In nearly all of them, there were a lot of red flags for Sami, and each one suggested contacting the GP. I spoke to my husband and told him about this, but he refused and said there was nothing wrong with Sami at all, but I needed to know.

A toddler with nonverbal autism holds a balloon
Courtesy of Zainab Siddqiui

So we made an appointment with my GP, and I shared my concerns with him. He agreed and made a referral for Sami to be seen by a pediatrician. We were told it would probably be a 6-month wait to be seen. But we were lucky because there was a cancellation and Sami was offered the appointment within a few months.

I remember feeling worried and scared whilst at the hospital waiting to be seen and thinking about what would happen. ‘What if it’s something really bad?’ ‘What if it’s nothing?’ So many feelings and worries were going around in my head, but we needed to know! We were called into the doctor’s room. She introduced herself and asked about our concerns, and all the while she was observing Sami. She tried to interact with Sami, but he didn’t make eye contact or respond. Sami was busy playing with a straw, another one of his obsessions.

A boy with nonverbal autism playing with straws
Courtesy of Zainab Siddqiui

I wasn’t expecting the doctor to tell us anything in the initial appointment, so I was shocked when she did. She said as soon as we walked into the room with Sami she knew straight away he was autistic, and she said his case was quite severe. Of course, she was telling us this unofficially, as he still had to go through the assessment process. We were referred to the Child Developmental Center for assessment, and again we had to wait a few months before we were seen by them.

After a 2-3 month wait, we finally received a letter from the Child Development Center for his assessment. We were asked to take Sami in every Wednesday morning for 3 weeks so they could complete their assessments. The first Wednesday we went in, I was really nervous. I don’t think Sami knew what was going on. We were called into this big room with lots of different play areas, and there were also another two families there whose children were getting assessed too. Sami was just so different from the other two kids. Sami had no words or much understanding, and he wouldn’t interact with the other kids or explore the play area. He wasn’t interested in the different toys they had out and just wouldn’t sit for still for any activity. Seeing Sami with other kids really hit hard: it showed me just how different he was and how behind he was compared to the other kids. We continued to attend the assessment days and then finally the big day had come.

A boy with nonverbal autism sits with his brother and sister
Courtesy of Zainab Siddqiui

The day to receive his formal diagnosis! Deep down, I knew what was coming but was still so scared and nervous as this was going to be all official, all on paper. We were called in by the doctor, and she told us Sami was on the spectrum and his needs were quite severe. She said he may or may not talk in the future, some kids do say a few words, but some don’t. She talked about how he would benefit from going to a special school. I knew about special schools, but never did I think my child would have to go to one. Since that day, everything started to move on quickly to get Sami an Educational Health Care Plan in place so he could attend a special school of our choice when he started full-time school.

While all this was happening, Sami started to attend a mainstream nursery. My heart broke a little more each time I dropped him off there. My beautiful boy was not like the other kids. He was so different and everybody knew it. Every time I went to pick him up, the other kids were telling their parents what they got up to that day, but Sami never did. I always had a smile on my face but inside was another story, each time I broke a little more inside. My beautiful boy could not tell me how his day went or if someone had upset him, so I had to place my trust in others and take their word, which is very difficult to do!

A boy with nonverbal autism stands on a couch
Courtesy of Zainab Siddqiui

A mainstream setting was just not right for Sami as he clearly stood out like a sore thumb amongst the other kids, so the search for a special school began. A school that would understand him and his needs, somewhere he could thrive to his full potential. After visiting many schools, we finally decided which one we would love Sami to go to, and we hoped he would get a place for September to start full-time. The school would be perfect for him, as he could stay on until college, and their facilities and staff were absolutely amazing!

Well, I’m pleased to say Sami got a place and has been going to his lovely special school for 5 years now. It’s the best decision we have ever made. Yes, it was very difficult at the start, but Sami is thriving and happy and has come a long way. He has started to use Picture Exchange Communication to communicate his needs with us, which really helps us to understand him. When he first started school, he had major problems with transition and would refuse to take his coat off all day, and some days he would refuse to get on transport to and from school, but he is a lot better now. Yes, has some bad days as we all do, but he amazes us with the progress he makes no matter how small.

A boy with nonverbal autism sits on a playground
Courtesy of Zainab Siddqiui

Sami had no communication skills before he started school. He used to just cry and cry, and we had to guess what he wanted. I tried picture cards at home, but they didn’t seem to work. Since he started school, he has been introduced to the picture exchange communication system (PECS), and he has come a long way. He can now request a food item using his PECS. Sometimes, he can get a bit confused, but he works so hard with them.

Another huge achievement for Sami was trying new foods. Up until last year, Sami would only eat a handful of things (roti, Weetabix, bourbon biscuits, raisins, and skittles), but now he has started to eat rice with some potato curry and samosas. I never thought I’d see him try a different food as no matter how hungry he was, he would only eat certain foods and would gag at the sight of something different and refuse to eat it. This may seem like a small achievement to some, but for us, it was really huge.

Sami is 9 years old now and is still nonverbal; he has never said a single word. I’ve never heard him say ‘MUM.’ I pray I can hear him say something, anything at all. There is hope he will one day say something, but at the same time, deep down inside the hope dies a little more each day. As he gets older, he is getting more frustrated because he does not have a voice. He starts to hit himself and get really upset, or he hits us. It’s so heartbreaking to see him when he is like that and not being able to help him. Can you imagine not being to tell others your wants and needs or if you’re not feeling well or hurting, only for people to guess what you want/how you feel? Can you imagine how frustrating it would be if you didn’t have a voice? Well, we live it. This is Sami’s life. He struggles on a daily basis, and nobody knows how much. Unless you have lived it, you will never truly understand!

A boy with nonverbal autism wearing large glasses
Courtesy of Zainab Siddqiui

One of the hardest parts as a mother to a special boy is imagining how his life will be once he is grown. Will he ever be truly independent? Sami is dependent on me: he needs help with dressing, brushing his teeth, personal care, and feeding. He doesn’t have much understanding of danger awareness, so he needs someone with him constantly so he doesn’t cause any harm to himself. But the thing that hits me really hard is wondering who will look after him when his dad and I aren’t around. Yes, Sami has an older brother and sister who love him dearly, but they already sacrifice so much and miss out on a lot. We hope they will look after him, but they too will have their own lives, and I wouldn’t want him to be a burden on them and their families. The future really scares me for my son!

A boy with nonverbal autism covers his ears
Courtesy of Zainab Siddqiui
A boy with nonverbal autism stands with his siblings
Courtesy of Zainab Siddqiui

One of the biggest challenges bringing up a child who has autism or a learning disability is that because it’s a hidden disability, people don’t understand our struggles. They look at Sami and see physically he is healthy, so how can anything be wrong with him? Also being Asian, there is a lot of stigma attached to such disabilities. People think he is mad or possessed or needs curing and they keep us at a distance. This is one of the main reasons I share Sami’s journey. I want to raise awareness and fight the stigma related to such conditions. I am not ashamed of him and never will be. I will not hide him away! Sami has as much right as anybody else to enjoy life and live it to its fullest. He is loved so much, and I wouldn’t change him for the world, but I wish people would change their mindset.

A boy with nonverbal autism sits in a stroller
Courtesy of Zainab Siddqiui
A boy with nonverbal autism holding flowers
Courtesy of Zainab Siddqiui

In the future, I hope he can be somewhat independent and would love for him to talk, even if it is just a few words. He struggles with a lot, but as he gets older, I hope it gets easier. Also, I hope people will not judge my son by just looking at him! Yes, he is physically fine but nobody knows his struggles, so please be kind. People need to educate themselves about learning disabilities and autism to know they are neurological disorders. Stop with stigma, as it’s very hurtful!

A boy with nonverbal autism on a three-wheeled bike
Courtesy of Zainab Siddqiui

Sami is gentle, affectionate, and loves abundantly. He does not need words to form bonds: his actions and facial expressions are how he responds. He is accepting of everyone if they treat him right. Sami is nonverbal at the moment but has a lot to say. It’s just communicated in a different way. Please take your time to get to know him and understand. He will show you how truly amazing he can be. Actions speak louder than words as you’ll see. Sami has taught us love needs no words.”

A boy with nonverbal autism wearing a green shirt
Courtesy of Zainab Siddqiui
A boy with nonverbal autism is kissed by his siblings
Courtesy of Zainab Siddqiui

This story was submitted to Love What Matters by Zainab Siddiqui. You can follow her journey on InstagramSubmit your own story here. Be sure to subscribe to our free email newsletter for our best stories, and YouTube for our best videos.

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