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Autism (ASD) - Information and Support

Information and support about Autism for families in Tower Hamlets

This page answers some frequently asked questions about Autism Spectrum Disorder and gives some basic information on local services and support. Click a question to see the answer. 

What is autism?

Autism is a lifelong condition that affects a person’s social interaction, communication, interests and behaviour.  These differences can impact on how someone forms relationships with other people and how they understand things and interpret their environment.

Autism is often called autism spectrum disorder (ASD), or sometimes autism spectrum condition (ASC). We are using ‘autism’ in this guide.

Organisations like the National Autistic Society and the Autism Education Trust prefer to use phrases like ‘autistic children and young people’ rather than ‘children and young people with autism’ because that’s what many autistic adults have said. We are following their lead in this guide.

Autistic people may also be affected by other conditions as well as autism. For example, some autistic people may also have a learning disability; some may also have attention deficit hyperactivity disorder (ADHD).

Every autistic person will have their own specific strengths and differences which are unique to them.
This video explains a little about what autism is and how it affects people:

More information about autism:

Find out more about autism on these websites:

Autistic children may react in different ways to other children:

These are some of the differences you might notice in younger children:

  • Not responding to their name
  • Avoiding eye contact
  • Not smiling when you smile at them
  • Not having the same interests in toys or people as other children their ages
  • 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
  • Repeating the same phrases
  • Liking familiar routines and getting upset when things change
  • Having intense special interests and wanting to repeat specific ways of playing

These are some of the differences you might notice in older children and young adults:

  • Misunderstanding 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
  • Finding it hard to make friends or preferring to be on their own
  • Taking things very literally 

What causes autism?

When someone is diagnosed with autism, it is natural to ask why. We do not have a reliable biological test for autism and for now we do not know the exact cause of autism.  The research we have suggests that autism may be a combination of developmental, genetic and environmental factors.

We do know that autism is:

  • NOT caused by poor parenting
  • NOT caused by vaccinations
  • NOT caused by eating certain foods during pregnancy

Can autism run in families?

Families with one autistic child have an increased chance of having another autistic child when compared with other families. 
The chance of having another affected child is estimated to be around 1 in 5 if you already have an autistic child.

Is autism more common in boys than girls?

More boys and men are diagnosed with autism than girls and women. There is a lot of debate about why that should be.

There is some evidence that professionals and parents find it more difficult to spot the signs of autism in girls. Some people think there may be some differences in how autism affects boys and girls which means that some assessments may not identify autism in girls in all cases. Some people think that girls work hard to ‘fit in’ with their neurotypical friends and this hides or masks the fact they are autistic. 

The National Autistic Society have more information on this issue.
There is an interesting article in Scientific American on this issue.

What to do if you think that your child may have autism:

If your child is under 5 years old, you should discuss your concerns with someone from one of the following services:

If your child is over 5 years old, you should discuss your concerns with someone from one of the following services:

  • The Special Educational Needs Coordinator (SENCO) or Inclusion Coordinator (INCO) at your child’s school.
  • Your child’s class teacher or form tutor.
  • Your GP
  • Your local Children and Family Centre 
  • The speech and language therapist based in your child’s school. The therapist may be part of the Barts Health NHS speech and language therapy team or come from another provider. Talk to the SENCO in your school to make an appointment to meet the therapist.
  • If your child is already receiving support from Tower Hamlets CAMHS, then talk to your CAMHS care coordinator.

How do you get a diagnosis of autism in Tower Hamlets?

If you think that a child/young person may have autism, they can be referred to ASDAS (Autism Spectrum Disorder Assessment Service).  

ASDAS is a specialist autism diagnostic service for children and young people aged up to 19 years old and is based at Mile End hospital.  The team is made up of different professionals and together they carry out specialist assessments for autism. 
More information on ASDAS.

In some cases where your child also has significant emotional, behavioural or mental health difficulties, CAMHS will complete a specialist autism assessment. In this case, you do not need a referral to ASDAS.
Some parents choose to buy a private autism assessment.  There are many providers to choose from and it can be difficult to find the best provider for you.  A good quality assessment will always be done by a team of experienced professionals who follow the NICE standards for autism assessments. 

The assessment for autism should include information about your child or young person’s development, an observation of their communication and interaction skills and a medical examination. Additional reports from nursery or school and other professionals should also be considered.

What support can you get while waiting for an autism assessment?

Professionals often describe children waiting for an autism assessment as having ‘social communication difficulties’. This is not a medical diagnosis, but a helpful term to help professionals and parents understand what kind of support might be best for the child.

The following services can offer support for children and young people with social communication difficulties while you wait for an assessment:

For children under 5, the following services can also offer support while you wait for an autism assessment:

In addition, the following services can also offer support for children in school:

All the services above will respond to your child’s needs whether they have a diagnosis of autism or not.

Top Tips when waiting for an autism assessment:

It can take a long time to get an autism assessment. There are some things you can do while you wait at the same time as getting help from the services above. Here are some helpful suggestions:

  • Find out as much as you can about autism using the links on this page.
  • Make a file of your child or young person's strengths and differences. This will help when meeting new professionals.
  • Contact the services above and find out the best ones that can support your family.
  • Find out about local support groups.
  • Think about how you can stay organised - it's likely you'll receive lots of paperwork, so you'll need a place to keep it tidy and safe.  If you speak to someone on the phone for example, make a note of what was discussed or agreed.
  • Ambitious About Autism provide information and advice for parents of children under 5.

How long does it take to get a diagnosis of autism?

Diagnosing autism is a complicated process and takes time to consider a lot of information. The numbers referred to ASDAS have increased over the years and the waiting times have increased.
Currently there is a long waiting list and it can take approximately 2 years to be seen for an assessment.

What is being done to address long waiting times?

Following the Local Area SEND inspection in 2021, the NHS increased funding for the ASDAS Team. The team are making changes to their pathway to speed up the diagnostic process.
There is more information on the response to the SEND inspection on the council website.

Services that support autistic children and young people after a diagnosis:

All of the services listed above in the section on supporting families before a diagnosis of autism will continue to be helpful.

If your child is diagnosed with autism, the following services are also available:

  • Phoenix Outreach Service provides expert advice and support to schools and parents.
  • The Autism Parents Support group offers support for parents
  • The Children with Disabilities team works with families of children with disabilities and can offer practical support like short breaks.
  • The Disabled Children’s Outreach Service helps support parents of children with learning disabilities. This will include some autistic children and young people, but many autistic children and young people do not have learning disabilities.
  • Jointly with the Disabled Children’s Outreach Service and the National Autistic Society, CAMHS run a post-diagnosis workshop for parents; CAMHS may provide individualized psychoeducation for children and parents who may require further support around the diagnosis.
  • CAMHS run a group programme. This includes groups for parents on behaviours of concern and sleep difficulties as well as groups for young people to help them think about social communication skills.
  • National Autistic Society Tower Hamlets Family Support Service
  • The Tower Project provides short breaks for children with disabilities aged 5 years to 18 years old.

For young adults, the following services can also be helpful:

AutismLinks is a national website dedicated to making helpful and sometimes vital links. It covers who to talk to, where to go and contains lots of helpful information all in one place.

Tower Hamlets Autism Communication Cards