A Day in the Life:
Understanding what is Autism
My name is Asma Khanum, I am a Speech and Language Therapist (SLT) and Managing Director of Chatterbug Speech and Language Therapy Service. As an SLT I have worked with autistic children and adults all my career. But this blog is about my journey from being a professional to a parent with a child who is autistic.
There are approximately 700,000 people with autism in the UK. Autism is a spectrum condition and not everyone with autism presents in the same way. It is not an illness or disease and people diagnosed with autism can live a happy and full life. Like everyone, autistic people will have things they are good at as well as things they struggle with. Some autistic people need little help or support whereas others may need a parent/carer to help them everyday. In the medical world, it is referred to as autistic spectrum disorder (ASD), whereas others refer to it as autistic spectrum condition (ASC). In our family we just simply refer to it as autism.
- Not responding to their name
- Avoiding eye contact
- Not smiling when you smile at them
- Fussy eater- getting very upset if they do not like a certain taste, smell or sound
- Repetitive movements, such as flapping their hands, flicking their fingers or rocking their body
- Not talking as much as other children
- Repetitive in the language they use e.g. repeating the same phrases
- Repetitive in their play
- Not seeming to understand what others are thinking or feeling
- Finding it hard to say how they feel
- Liking a strict daily routine and getting very upset if it changes
- Having a very keen interest in certain subjects or activities
- Your child gets very upset if you ask them to do something
- Finding it hard to make friends or preferring to be on their own
- Taking things very literally – for example, they may not understand phrases like “break a leg”
Many children with autism may also struggle with constipation and sleep. The presentation of autism in girls is also different making it harder to spot in girls. For my daughter her school was unaware of her needs and had no concerns. She was doing well and was able to mask her difficulties and appeared to be coping well in social situations.
As a baby she was an easy child, she did not demonstrate any of the more obvious features. She preferred to be at home where it’s quieter but able to cope with the our crazy pace of life. The first lockdown was when I actually got to spend some time with her. Without the pressures of running around between home, school and after school activities. I noticed how much she struggled with home schooling and tackling new tasks even though she was academically very able. As we sat talking one day she just randomly shared “Mama I don’t like eye contact, I think it’s really scary looking into people’s eyes” it was at this point I really started thinking “Is my child autistic?”
Coincidentally, we were also exploring the possibility of setting up our own autism assessment clinic as there had been a massive spike in parents contacting us asking if this was a service we could provide.
I went through experiencing a huge sense of guilt and questioning myself. Why had I not noticed this before? It was only after this conversation that I sat back and thought and started to piece together the various aspects of this very complex picture. I was fortunate enough to be able to seek the support of my colleague who is an autism specialist and encouraged me to think about the situation as a parent rather than a professional. We realised that as a family we had naturally adapted to her needs which meant she was coping really well at home. However, things were very different at school. After a lot of soul searching we decided that it would be in her best interest to get her diagnosed.
Here are the steps we took getting our daughter assessed for autism;
- Referral to Chatterbug Speech and Language Therapist – My daughter’s presentation was very subtle and I wanted to get another opinion before I discussed it with her school. The SLT met and assessed my daughter’s understanding of language.
- Referral to the Chatterbug Autism Assessment Panel – The panel consists of a Pediatrician, Educational Psychologist and Speech and Language Therapist and follows the National Institute of Clinical Excellence (NICE) guidelines. While an increasing number of professionals and organisations offer autism assessments, not all follow NICE recommendations. Resulting in the local authorities rejecting the diagnosis.
- MDT Assessment- The SLT (speech and Language Therapist) and Pediatrician assessed my daughter they then all met as a team with the EP to discuss their findings. Once they had all agreed she met the criteria they shared the findings with me in a detailed report which gave me an overview of her strengths and areas of needs. They talked me through the next steps and also shared the finding with the school so they could also support her.
Depending on the age of your child a Health Visitor or GP is a good place to start. They will be able to make referrals to the appropriate service and also advise you of any other support available in your local area. Child development centres or a community paediatrician will refer children under 5. Child Adolescent Mental Health Service (CAMHS) will make referrals for school age children. It is important to discuss your concerns with schools as observations of your child in their schools or setting will help inform the process.
Unfortunately there are long waiting times for assessment and not all local NHS services provide post diagnosis support. Almost half of parents whose children have been referred for an autism assessment have to wait 18 months or more for a formal diagnosis and in some extreme cases up to 3 years.
Chatterbug have recently launched their own private diagnosis service to find out more about our Autism Assessment Panel Click Here
So now that you’ve heard about our journey as a family what bits of this can you relate to or has your journey been very different to this? Are there things that you can relate to? We would love to hear about your journey and if there is anything else you would recommend. Please visit our Facebook page here to send us a message or comment.