Jo Condon, Autism Expert and our Clinical Lead, has written this article to help those considering whether they or a loved one may be on the autism spectrum. She explains the different language used to describe autism, the signs of autism, when someone should access an autism assessment, how to go about getting an assessment, and what to expect after diagnosis.
Jo has worked in the autism field for over 25 years and is highly experienced in assessing, diagnosing, and supporting individuals with autism, including children and adults. Her professional background includes leading specialist autism services, developing new services, and providing advice to local and national governments. Jo has published research in relation to the identification of autism.
What is autism spectrum disorder?
Autism spectrum disorder (ASD) is a neurodevelopmental condition, which means that an autistic person’s brain develops and functions differently from that of typically developing individuals. ASD is a lifelong condition, and research shows that autism is likely to be present before birth. For many, autism is not identified until later in life; however, autism has always been part of their neurology. Autism is not ‘treatable’, understanding and adjustments can make a huge difference to daily life.
Autism is a neurobiological difference, but is often referred to as a social disability. This is because many of the challenges that autistic people face relate to the social expectations and stimuli of a mainly neurotypical world.
What is the difference between autism spectrum disorder (ASD), autism spectrum condition (ASC) and autism?
Autism spectrum disorder (ASD) is an official diagnostic (medical) term used in the DSM-5, whereas autism is a more informal term which is commonly used when referring to ASD. Preferring to think of autism as a difference rather than a disorder, the autism community began to use the term autism spectrum condition as an alternative description. Essentially, ASD, ASC and autism are different ways of describing the same thing.
What is the difference between autism spectrum disorder and Asperger’s?
Asperger Syndrome or Asperger’s Disorder is a historical diagnostic term that is no longer used. Prior to 2013, there were a number of different diagnoses used to categorise subtypes of autism, including autistic disorder, Asperger’s disorder and pervasive developmental disorder. The newest version of the diagnostic manual (DSM-5) was published in 2013. It reflected the broader understanding of autism as a spectrum, therefore replacing the previous subtypes of autism with the diagnosis autism spectrum disorder.
What is neurodivergence?
The term neurodivergence refers to the range of individuals who perceive, process, and respond to information in a way that differs from that of ‘typical’ individuals (neurotypical). Autism spectrum disorder, ADHD and dyslexia are neurodivergent conditions, and these conditions frequently overlap.
What are the signs of autism?
The signs of autism vary greatly from one person to another, but the core characteristics are always present. Strengths, difficulties and observable behaviours differ due to age, sex and autism severity.
The main characteristics of autism are:
- Difficulties with social communication and interaction
- Restricted, repetitive interests, activities or behaviours
Difficulties with social communication and interaction
Those with autism experience difficulties related to interacting with others around them. The areas of social communication and interaction that are impacted are:
Language difficulties: Difficulties can range from not having any language to struggling to understand what others mean when they speak figuratively
Decreased non-verbal communication: Differences can range from not using gestures, facial expressions or eye contact when communicating to feeling uncomfortable maintaining eye contact and having a limited range of facial expressions
Difficulties with social understanding and social responses (socioemotional reciprocity): The differences and difficulties can range from not responding to name or another’s social approach to finding it difficult to communicate emotion
Difficulties in developing or maintaining relationships: These issues can range from showing no interest in playing with peers to only being able to manage one or two friendships
Restricted, repetitive interests, activities or behaviours
For a diagnosis of autism, an individual must display 2 out of the 4 following behaviours:
Repetitive body movements, use of speech or objects: including finger flicking, hand flapping, picking fingers, spinning, lining up toys or objects, repeating words and phrases
Insistence on sameness, routines or rituals: Feeling upset when things change, difficulty at times of transition, avoiding new experiences, having set routines or rituals that must be followed
Restricted, fixated interests: Being unusually attached to a certain object, having an interest in unusual subjects/objects, being intensely interested in a specific topic, or obsessively learning facts about a subject of interest
Sensory differences: Needing to seek sensory feedback (e.g. sniffing or licking, watching lights), and/or avoiding or being distressed by sensory input (e.g. distress in response to the sound of a hand dryer, food refusal)
Is lining things up a sign of autism?
Lining up or ordering toys, treasured items, or items in the environment can be a sign of autism. This behaviour falls into the category ‘repetitive use of objects’ within the diagnostic criteria. However, the need to line or organise things can also be seen in obsessive-compulsive disorder, or in people who like things to be neat. If the behaviour occurs alongside other behaviours outlined above, then it may be due to autism spectrum disorder.
Is a child putting their hands over their ears a sign of autism?
When a child places their hands over their ears in response to a loud noise, it can indicate noise sensitivity, which is a characteristic of autism. However, many children are sensitive to loud noises as their senses are developing. If the behaviour is seen often, along with the other characteristics highlighted above, it may be related to undiagnosed autism.
Can I be autistic if I have empathy?
Over-empathising is often seen in autism. Many autistic adults feel others’ emotions acutely. They can become very upset or angry when sensing injustice, seeing others being treated unfairly, or when people treat animals poorly.
Can you have autism if you make eye contact?
Historically, it was believed that if someone made eye contact, they could not have autism. Now, we recognise that there is a whole spectrum of how autistic people use eye contact. However, autistic people who use eye contact typically often report feeling uncomfortable when doing so.
Isn’t everyone somewhere on the autism spectrum?
Autism is a spectrum condition; there are huge differences in the way autism impacts each individual. Autism is a neurobiological condition that results in a pattern of specific behaviours that impact an individual’s day-to-day functioning; the belief that everyone is somewhere on the autism spectrum is a myth.
Is it wrong to label my child with autism?
An autism diagnosis should not be thought of as a ‘label’ but as an understanding of difference. Many parents are faced with negative views about ‘labelling’ a young child when they share their concerns with others, often professionals. Early identification leads to better outcomes for autistic children, and so an early autism assessment is the right thing to do; it is never wrong to ‘label’ a child with autism.
How do I know if I need an autism assessment?
As an adult, you may have always felt that you were different to those around you, you may have been diagnosed with anxiety or depression but felt that there was more going on. The characteristics of autism present as a pattern of differences, as outlined above. If you can identify with struggling in most of these areas, both now and when you were younger, you will likely benefit from an autism assessment. Many autistic adults have spent years engaging in masking and camouflaging behaviours. Regularly feeling exhausted following periods of social interaction and feeling anxious or irritated in response to plans changing or sensory input from the environment are common experiences for adults with undiagnosed autism.
Free autism screening tools for adults
Autism screening tools are questionnaires that can help identify those who would benefit from an autism assessment. They are generally reliable indicators of possible autism spectrum disorder. You can access the 10-item autism quotient (AQ-10) here.
How do I know if my child needs an autism assessment?
Many typically developing children will display one or two of the characteristics of autism outlined above; for example, many young children will flap their hands when they are excited. However, if they are displaying many of the characteristics or the whole pattern of autism behaviours, you should seek an autism assessment. It is also worth remembering that many children, especially girls, mask and camouflage their autism. They may appear to be more social because they copy others’ behaviour. Difficulties with social interaction may not be obvious in this case, but they may appear socially shy or become anxious about social interaction.
Free autism screening tools for children
The 10-item autism quotient AQ10 can be a helpful screening tool for identifying children aged five or older or teenagers. You can access the AQ-10 for free here. There is also a screening tool for toddlers called the M-CHAT. You can contact us if you would like to complete this.
At what age can you diagnose autism?
A diagnosis of autism can usually be made from the age of 2 years old. Characteristics of autism can be observed in some children from as young as 6 months old, but it is usual to wait until around 2 years before completing an assessment. It is worth noting that not all autistic children show obvious signs of autism at this young age. For some children, difficulties only become apparent when social demands exceed social abilities. Difficulties transitioning to high school, university or work are common points at which differences become apparent.
Does an autism diagnosis make a difference?
An autism diagnosis can make a huge difference in terms of self-understanding. Being on the autism spectrum causes difficulties with social understanding and social interaction. Those who go through life not realising that these differences are related to autism can experience issues with self-esteem and self-worth. An autism diagnosis enables better self-understanding, can be a catalyst for seeking out others with similar life experiences, and also promotes understanding from others. Autism spectrum disorder is classed as a protected characteristic within the Equality Act (2010). This means that education placements and employers have a legal duty to make reasonable adjustments for those with an autism diagnosis. These adjustments can make a huge difference to an individual’s experience in school, college, university or work.
How do I get assessed for autism? How do I get my child assessed for autism?
When it comes to accessing an autism assessment, there are two options:
- NHS autism assessment
- Private autism assessment
You will not need to pay for an autism assessment on the NHS, but if you choose the private route for autism assessment, there will be a cost that you will need to fund, or will need to be funded through another avenue, such as private health insurance.
Accessing an NHS autism assessment
A specialist team should conduct an autism assessment, typically referred to as the autism assessment team or neurodevelopmental assessment team within the NHS.
For children, the starting route of an autism assessment tends to be referral from the education setting, or a specific health professional, such as a speech and language therapist or health visitor, although the process can vary depending on the area. In some areas, GPs can refer a child for an autism assessment, but this is rare.
For adults, the usual route for referral to the specialist autism assessment team is through the GP; however, some teams offer a self-referral option for adults.
You can find details of your local pathway on your local NHS website.
How long are the NHS waiting lists for an autism assessment?
NHS waiting lists are growing month on month. The NHS publish data about autism waiting times in England, and there are currently around 225,000 people awaiting an autism assessment in England alone.
The waiting time for an autism assessment can vary between areas and age groups, but you can expect to wait between 6 months and 5 years, depending on the area.
Accessing a Private Autism Assessment
Adults can self-refer for a private autism assessment, and parents can refer their children for an assessment. The usual referral route is to call the service you choose or complete an online form.
Private autism services typically do not have waiting lists, or their waiting lists are significantly shorter than those of the NHS.
Does the NHS accept a private autism assessment?
Yes, the NHS will accept a private autism assessment as long as it has been completed in line with the National standards outlined in the National Institute for Clinical Excellence (NICE) Guidelines. There are two guidelines covering autism assessments, one for children and one for adults. It is essential that you select a private autism assessment provider that adheres to these guidelines and provides a report that demonstrates compliance, such as ours.
Do schools accept a private autism diagnosis?
Yes, schools must accept a private autism assessment as long as it has been completed to the standards expected by the NHS, as outlined above.
Can a private assessment be used for an EHCP?
Yes, a private autism assessment can be used as part of the education, health and care needs assessment process and the education, health and care plan review process. Within the legislation governing special educational needs, there is no distinction between private and NHS assessments. An assessment can be helpful within the EHCP process by highlighting the child’s special educational needs or identifying their specific needs. For some special schools, an autism diagnosis is required for admission.
How much does it cost to pay privately for an autism assessment?
The cost of an assessment varies; a Google search will show prices that range from £1000 to £4500. Some companies are not transparent about their pricing and charge for pre-assessment or advertise costs after deposit, so be aware of this. A full autism assessment with us costs £1995.
Why do private autism assessments cost so much?
The average cost for a private autism assessment is not significantly different from the overall cost to the NHS for completing an autism assessment. It can seem very high when we are accustomed to accessing free healthcare services. Private assessment companies have to cover a range of costs, from web hosting to the salaries of their administration team; skilled and experienced clinicians also cost more, and so you may pay a premium for this.
What happens during an autism assessment?
In order to ascertain whether a child or adult meets the diagnostic criteria for an autism diagnosis, clinicians will need to gather a wide range of information about the individual, including:
- Current concerns or difficulties and the impact they have
- Medical history
- Developmental history
- Education history
- Autistic characteristics demonstrated over the life span
- An observation and interview to observe social communication and interaction skills
- For children, information about how the child presents in an educational setting
How this information is gathered can vary between services.
The gold standard approach to an autism assessment will involve the use of standardised assessment tools to gather much of the information required; these include:
- Autism Diagnostic Observation Schedule, 2nd Edition (ADOS-2)
- Autism Diagnostic Interview – Revised (ADI-R)
The ADOS-2 is used as a tool to standardise the observation of social communication and interaction skills. This part of the assessment involves a combination of activities and questions/interactions designed to enable the administering clinician to observe the child or adult’s responses across a range of contexts.
The ADI-r is a standardised interview administered with an ‘informant’ (usually a parent) who knows or knew the individual being assessed in childhood. The interview explores a range of autistic characteristics; for older children, adolescents, and adults, it examines current presentation and presentation in young childhood.
For adults who do not have an informant who knew them in childhood, alternative assessment tools such as the Autism Clinical Interview for Adults (ACIA) can be utilised to gather the information needed.
Reputable private autism assessment services, such as ours, will use these tools as standard practice within their autism assessment process. However, NHS assessment services often lack the capacity to administer standardised tools and may gather information through informal observation and interviews.
As part of the local autism assessment pathway, NHS services will often ‘screen’ for the likelihood of autism spectrum disorder by gathering some of this information through forms and questionnaires and then review this and decide whether someone is showing enough autism characteristics to proceed to their autism assessment pathway. Some NHS pathways have a pre-assessment appointment where a brief interview and observation is completed to decide whether to proceed to a full autism assessment.
If you commission a private autism assessment, the team will complete the full assessment. Many private autism assessment services, like ours, will offer a free screening service.
What if the outcome of the assessment says it is not autism?
Not every autism diagnostic assessment will lead to an autism spectrum disorder diagnosis. During the assessment, specific information related to autism characteristics is gathered, which usually means an alternative diagnosis cannot be given. However, if experienced professionals have conducted the assessment, they will usually be able to suggest what further assessments would be beneficial. For example, if they feel ADHD would better explain symptoms, they will recommend an ADHD assessment.
Sometimes the behaviours that led an individual to seek an autism assessment are attributed to personality traits, in which case further assessment will not be necessary.
What to do if you do not agree with the outcome of an autism assessment
If you do not agree with the outcome of your autism assessment, you should speak to the team who completed the assessment in the first instance and ask them to explain how they reached their diagnostic conclusion; you can also provide them with further evidence you think they have missed.
If you are not happy with the outcome of your NHS assessment, you can:
- Speak to your GP, and ask if they will refer you for a second opinion
- Seek a second opinion through a private autism assessment
What happens after an autism assessment?
After your (or your child’s) autism assessment, you will receive a report which outlines the information gathered during the assessment process, along with the diagnostic outcome. The report should also contain details of autism support services as well as personalised recommendations. Personalised recommendations will be made based on the information provided or observations made during the assessment. For example, if it has been noted that a child has not yet developed joint attention skills, guidance on promoting these skills will be provided.
You should also be offered a feedback/follow-up appointment after your assessment. During this meeting, you can clarify any points in the assessment report that you are unclear about and also request specific advice on issues that are causing difficulties, such as sleep problems.
Support following an autism diagnosis
The support available following an autism diagnosis varies geographically. Most areas have adult support groups and parent support groups, which are run by charities such as the National Autistic Society. Some areas have Local Authority / NHS-run support groups and training programmes. In England, you can find these via the Local Offer website, and in Wales, via your local authority website.
Adults may find post-diagnostic counselling helpful. Post-diagnostic counselling can help you to understand your autism diagnosis and the impact that autism has on your daily life, and to help you develop coping strategies. This is something that you can access privately, if it is not available through public services in your local area.
Parents should arrange a meeting with their child’s school to share the assessment results and discuss any necessary adjustments and support required within the school environment.
University students can share their diagnosis with their university’s wellbeing service to access support from them.
Adults who are employed should consider sharing their diagnosis with their employer. Employers have a legal duty to make reasonable adjustments for employees with an autism diagnosis, as outlined in the Equality Act (2010). You may also be eligible for support in employment from the government’s Access to Work scheme.
Financial Support After an Autism Assessment
Those aged 16 or over may be eligible for Personal Independence Payment (PIP) to help with additional living costs.
Parents of children aged under 16 may be able to claim Disability Living Allowance to help with the additional costs of looking after the child. Families on a low income may also be able to access financial support from the Family Fund.
University students may be eligible for Disabled Student Allowance to help with additional costs during their studies, the application process is different in England and Wales.
Further Information and Advice
For further information about the signs of autism and the diagnostic assessment, please check out the other articles on our website. If you would like further advice as to whether an autism assessment is the right thing for you or would like to discuss an assessment for autism spectrum disorder, don’t hesitate to get in touch with us. Our team are highly experienced in assessing the wide range of autism presentations and will be more than happy to offer you advice.
