In this guide, Jo Condon, an autism specialist, outlines everything that parents who are considering a private child autism assessment need to know. From recognising the signs of autism to choosing a provider, we answer all the questions parents have regarding autism assessments.
What is autism?
Autism Spectrum Disorder, or autism, is a neurodevelopmental disorder that affects the way a child interacts with others and their environment.
Autism is characterised by difficulties in social communication and restricted, repetitive behaviours, including sensory differences. Autism is a lifelong condition and often runs in families.
What causes autism in children?
The cause of autism is not completely understood, but the cause is likely to be a mixture of complex genetic and environmental factors.
Studies have identified a number of genes that are associated with autism, and it is common for autism, or autism traits, to run in families. A child is more likely to be diagnosed with autism if they have an autistic sibling.
There are also environmental factors that appear to increase the risk of autism, although there is no evidence that these factors alone cause autism. Environmental factors that are thought to increase the risk of autism include:
- Low birth weight
- Premature birth
- Older parents
- Maternal use of Sodium Valproate
- Birth complications
How common is autism amongst children?
Researchers generally agree that the prevalence of autism (how common autism is) in the UK is around 1%. This means that 1 in 100 children meet the criteria for autism spectrum disorder.
A study by the U.S. Centers for Disease Control and Prevention suggests that 3.2% or 1 in 31 8-year-olds in the USA are identified as having autism spectrum disorder.
Autism is underdiagnosed in the UK, especially in adulthood. A recent review suggests that as many as 90% of autistic adults aged 40 and over are not diagnosed.
Autism is more prevalent in boys than girls; the estimates vary between 3 to 5 boys having autism for every girl. This may be because girls tend to mask their difficulties.
Other conditions associated with autism
Individuals with autism are more likely to experience certain other conditions than the general population. Autism is associated with higher rates of:
- Attention deficit hyperactivity disorder (ADHD)
- Epilepsy
- Intellectual disability
- Anxiety
- Depression
- Eating disorders
When do the signs of autism start to show in children?
Signs of autism begin to emerge at different ages in different children. For some children, signs of autism can occur as young as 6 months old. At this age, some parents notice that their child is reluctant to make eye contact, shows little interest in people or begins to engage in repetitive movements. For other children, signs might not be obvious to parents until a child is older, sometimes in their teenage years.
At what age can my child be assessed for autism?
Autism can be diagnosed from around the age of 2
How is autism treated?
Autistic children have a different neurology from their neurotypical peers; autism is not something that can be ‘treated’ or ‘cured’. However, autistic children can be supported by those around them understanding these differences, adapting their environment and helping them to learn skills using autism friendly strategies. Some children benefit from specific approaches such as intensive interaction.
Characteristics of autism in children
Autism is characterised by:
- Difficulties with social interaction and communication
- Restricted and repetitive interests and behaviours, including sensory differences
The way in which these characteristics impact a child can vary based on the individual child, developmental level, age and gender.
Signs of autism in children: social communication and interaction
All children with autism experience difficulties with social communication and interaction, signs may be more obvious in some children and less obvious in others. Girls will often try to mask their difficulties and compensate for their differences by copying others, avoiding interaction or using rehearsed responses.
Difficulties with social communication and interaction can impact:
- Use and understanding of language
- Use and understanding of non-verbal communication
- Response to others
- Interest in, and interaction with, others
- Play
You might see the following behaviours in an autistic child:
Use and understanding of language
- Not using words or phrases by the expected milestone
- Regression in language ability
- Only using words or phrases that are copied from others or videos
- Confusing you/I or referring to themselves by their own name
- Using language that makes a child sound ‘older than their years’
- Struggling to understand idiom and metaphor
- Using reduced language to communicate
- Using language that is quite repetitive, or always answering questions with the same response
- Having an unusual pitch, tone or volume of speech
Use and understanding of non-verbal communication
- Does not point to make needs known
- Cannot follow a point
- Reduced facial expression, for example, is always smiling or has a neutral expression
- Avoids eye contact, eye contact is fleeting or only gives eye contact on their own terms
- Struggles to read your gestures or facial expressions
- Reduced use of hand gestures, for example, does not beckon with a hand or place a finger on lips to mean ‘shh’
Response to others
- Does not respond to name being called
- Does not always respond to your smile by smiling back
- Does not respond to, or shies away from, unfamiliar adults
- Looks to you to respond for them
- Responses appear blunt or unintentionally rude
- Responds negatively to requests
Interest in, and interaction with others
- Lack of interest in engaging with peers
- Does not copy parent’s behaviours or actions
- Prefers to play alone, or prefers to spend time alone
- Engages to get needs met, rather than to interact
- Struggles with social chit chat
- Does not offer comfort when someone is hurt or upset
- Cannot manage interacting with more than one person at a time
- Shows little interest in friendships or prefers to have one friend
Play
- Does not engage in imaginative or pretend play
- Plays alongside others rather than with them
- Does not join in games such as ‘Row, Row, Row Your Boat’
- Imaginative or pretend play is limited and repetitive
- Follows others’ lead when playing, likes to be told what to do
- Tries to control play with others, likes to tell others what to do
- Cannot play with groups of children
Signs of autism in children: restricted and repetitive interests and behaviours, including sensory differences
Four areas are considered within the area of restricted and repetitive interests and behaviours:
- Repetitive motor movements, speech or use of objects
- Routines, rituals and insistence on sameness
- Restricted, highly focussed interests
- Sensory differences
For a diagnosis of autism, children must have difficulties in 2 of the 4 areas. These often change with age, with younger children tending to show behaviours related to repetitive use of objects and older children developing intense interests. However, this is not always the case.
You may observe the following behaviours in autistic children:
Repetitive motor movements, speech or use of objects
Motor movements
- Finger flicking, tapping or twirling
- Flapping hands
- Repetitive hand clasping, knuckle cracking or picking skin
- Spinning
- Bouncing and jumping whilst moving hands
- Adopting an unusual position of the arm, hands or torso
Speech
- Repeating another’s words or phrases after they have said them (immediate echolalia)
- Repeating another’s words or phrases throughout the day (delayed echolalia)
- Repeating words or phrases that they seem to enjoy
- Repetitively counting or saying the alphabet
Use of objects
- Lining objects in rows
- Setting play scenarios up but not wanting to play with the toys
- Spinning objects and wheels
- Placing objects in specific positions and not wanting them moved
- Collecting objects with no obvious enjoyment of using or looking at them
Routines, rituals and insistence on sameness
Routines
- Needing things to be done in a certain order or way
- Insists on following a specific routine when getting ready for the day, bathtime or bed
- Struggles with changes to the daily routine
- Finds it challenging to cope with transitions, for example, starting or returning to school
- Dislikes spontaneous activities, needs time to plan and prepare for non-routine events
- Seeks reassurance about activities outside the home
Rituals
- Engaging in fixed behavioural sequences that appear compulsive (and needing to start over if the sequence is interrupted)
- Insisting on saying things in a specific, sequenced way (and needing to start over if the sequence is interrupted)
- Need you to respond to a question or statement with the same specific phrase each time
- Insists on doing or touching things a specific number of times
Insistence on sameness
- Insists on using the same beaker, plate or cutlery
- Always has to sit in the same seat at home or in the car
- Needs to follow the same route
- Wants to eat the same thing every day
- Finds it difficult to shift from one task to another
Restricted, highly focussed interests
- Has preoccupations or interests appear unusual or not age-appropriate, for example, vacuum cleaners, drains or lawn mowers
- Has a hobby or interest that is pursued intently and occupies much time
- Needing to learn facts and details about an area of interest or needs to practice intensely
- Develops an encyclopaedic knowledge about a subject
- Shares facts and details with others, even when they are not particularly interested
Sensory differences
- Appears to struggle with specific sensory input, for example, dislikes loud noises, is a fussy eater or refuses to wear certain clothes. Find busy environments uncomfortable
- Seeks sensory input from the environment, for example, strokes hair, chews clothes or insists on laying under a blanket
Other behaviours seen in children with autism
Although not part of the diagnostic criteria for autism, it is common for autistic children to experience:
Difficulty regulating emotions: Children with autism often become easily overwhelmed and struggle to regulate their emotions. They may experience frequent meltdowns or shutdowns and it can often be difficult to understand what is causing them distress
Sleep issues: Difficulties with sleep, or appearing to not need much sleep, is often an issue for children with autism and their families
Differences in autism presentation between males and females
Girls with autism are often missed because of the masking and camouflaging techniques they use. It is thought that this is because girls tend to be more socially aware and socially driven than boys. From a young age, girls with autism start to engage in behaviours to ‘fit in’ and this can make their autism characteristics less obvious to anyone looking on.
Behaviours seen in girls with autism include:
- Taking a passive role in interaction, speaking only when spoken to and using similar responses to others
- Taking control in interaction, talking ‘at’ people, leaving little space for comment or questions
- Often using responses such as “I’m not sure about that” or “I can’t remember” to avoid further questions
- Using rehearsed phrases when interacting with others, for example, asking “Did you have a good day?” in the same way
- Becoming exhausted after periods of social interaction
- Having special interests that are not obviously unusual, for example, drawing or make-up
- Having issues with specific sounds, such as people chewing or sniffing
- Managing changes and non-routine events but needing to know plans and details in advance
How do I know if my child really needs an assessment?
Early identification, support and intervention has been shown to improve outcomes for autistic children. The presence of autism is often noted in the early years, but for children who have average or above-average verbal skills and intellectual ability, the signs are not always obvious when young.
For many children, difficulties only begin to emerge when social demands increase in early teenage years, or when there has been a significant change or event that they struggle to cope with.
Whether aged 2 or 12, an autism diagnosis can make a huge difference to a child. Understanding from others, access to support, and for older children, self-understanding, can be life-changing.
In autism, we see a pattern of differences as outlined earlier in this article. Whilst experiencing difficulties in one or two areas can be seen in typically developing children, difficulties across most areas is a significant indication that an autism assessment is needed. Here are some of the ways you can learn whether your child really needs an autism assessment:
Checklist for autism in children
This brief checklist considers the 7 signs of autism. If your response is ‘yes’ to four or more of the questions, you should consider an autism assessment for your child.
- Is your child experiencing difficulties in interacting with others, including new or unfamiliar people?
- Is it difficult to understand what your child needs, wants or is feeling from observing their facial expression, eye contact and gestures alone?
- Does your child have difficulties understanding, making or maintaining friendships?
- Does your child struggle with changes?
- Does your child move their hands, body or objects such as toys in a repetitive way?
- Does your child have intense interests or preoccupations?
- Does your child regularly seek sensory input or appear distressed in relation to sounds, smells or textures?
Screening tools
Screening tools are standardised questionnaires that have been developed to help recognise when an autism assessment is needed. If you are not sure whether your child needs an autism assessment, completing autism screening tools will help you to decide. Evidenced base screening tools are highly reliable in predicting the likelihood of a child being on the autism spectrum.
Neurodevelopmental consultation
Our autism specialists are experts at the identification or recognition of autism in children. Discussing your concerns with one of our specialists can also help you to understand whether your child should be assessed for autism.
Deciding whether to pursue NHS or private autism assessment
If you recognise that your child needs an autism assessment, you can either pursue this via the NHS or through a private route.
The NHS pathway for autism assessment varies between different areas. For children, the referral route is typically through their school. Waiting lists for assessment via the NHS vary, with some areas citing a waiting list of over 5 years.
Alternatively, a private autism assessment can be accessed via a parent referral. There is an associated cost for a private child autism assessment, but benefits of going private include:
- an assessment will be arranged within a few weeks
- access to experts in the field of autism
- robust report
- bespoke advice and recommendations
How much is a private autism assessment for a child?
The cost for a complete assessment with us is £1,995 outside London and £2,195 if you choose our central London clinic.
Will health insurance cover the cost of a private autism assessment?
This depends on your provider and policy type. We often complete assessments funded by private insurance but are aware that autism assessments are not covered on all policies. You will need approval from your insurance provider before going ahead.
Will a private autism assessment be accepted?
Will the NHS recognise a private autism assessment?
Yes, as long as the assessment has been completed in line with the National standards outlined in the NICE guidelines, the NHS will recognise a private autism assessment. These standards include:
- A multidisciplinary team
- Registered, trained and experienced clinicians
- Robust information gathering, including current and historical information
Will my child’s school accept a private autism assessment?
Schools must accept a private autism diagnosis, it would be discriminatory for them not to.
Can I use a private report to get an EHCP?
Yes, a private report can be used in the EHCP processes. The law that outlines the education, health and care needs assessment and review processes does not distinguish between information provided by NHS professionals and information provided by private service professionals.
What happens during a private autism assessment for children?
A robust autism assessment for a child should follow the standards published in the NICE guidelines. An extensive amount of information is gathered during the assessment process. You can expect the following steps during the assessment:
Screening tool: A screening tool will usually be issued for you to complete. Screening tools are used to understand whether an autism assessment is needed, but also provide a useful sense-check for clinicians during the assessment process
Background information: You will be asked to share information about your current concerns for your child and also your child’s family history, social history, education history, developmental milestones and medical history
Information from the education setting: If your child is in nursery, school or college, the assessment team will (with your consent) contact the education setting to gather information about how your child presents there
Developmental history focusing on autism characteristics: You will be interviewed about your child’s behaviours, strengths and differences. For children over 5, you will be asked questions about how they present currently, as well as how they presented when they were younger. The gold-standard tool for gathering this information is called the Autism Diagnostic Interview – revised (ADI-r)
Observation: Your child will need to be observed by the clinical team. A clinician will observe how your child interacts and communicates, if appropriate, how they play, and will also look out for restricted and repetitive behaviours. The gold standard tool called the Autism Diagnostic Observation Schedule – 2nd edition (ADOS-2) that can be used to inform this session
Multi-disciplinary review: When all the information has been gathered, it will be reviewed by the multi-disciplinary team. The team will decide whether the DSM-5 diagnostic criteria are met and will also consider the best advice and recommendations for your child
Report: You will be issued a robust report which details all the information gathered and outlines the reason for the diagnostic decision. The report will also contain advice and recommendations
Follow-up/feedback: After your child’s autism diagnostic assessment, you will be offered an additional appointment with an autism specialist. This is an opportunity for you to ask specific questions or gain more understanding of the assessment report
How long does a private autism assessment take?
We can usually start the assessment process within 2 weeks and then complete the assessment process in 2 -4 weeks, but this can be influenced by factors such as your availability and how quickly the school provide us with the information we need.
In emergencies, we can complete an assessment in less than a week.
What if the school do not recognise my child’s autism characteristics?
Whilst many nurseries and schools recognise when children are presenting with autism characteristics, this is not always the case.
Masking: Children who mask their difficulties may get overlooked in school. Often, those who mask try their best to blend in at school and follow the classroom rules and expectations. Masking and camouflaging behaviours may make them appear as if they are coping well socially
Rigid thinking: Children who are more vocal but think rigidly may be incorrectly labelled as challenging or argumentative, rather than understood
Overwhelm and dysregulation: Children who frequently become overwhelmed and dysregulated may lash out or try to run away from the situation that is bothering them. This can sometimes lead to schools interpreting the issue as a behavioural problem
Referral for an NHS autism assessment can be difficult when a school or nursery does not recognise the signs of autism, as many pathways place schools as the referral route. However, parents can refer their child for a private assessment.
During the assessment process, we gather information from parents as well as the school, and also complete our own observation. We ask the school to provide information on the child’s presentation, including specific behaviours such as how they use gestures or facial expressions. We then compare this to the information we have gathered and observed ourselves and make a clinical judgment as to whether the school may be missing key signs of autism.
My child is high-masking, how will you see the signs of autism in the assessment?
We are highly skilled autism specialists and are experienced in assessing the range of autism presentations. Even high-masking children will demonstrate signs of autism, but these might not be so obvious to untrained adults. We observe social communication and interaction skills closely, for example, looking at how social approaches are made and whether verbal and non-verbal behaviour are coordinated during this.
We also look for subtle body movements and the things that the child enjoys engaging with or talking about.
How do I choose a private autism clinic?
When choosing a clinic, it is essential to select a reputable provider that offers NICE-compliant autism assessments. You can find out whether a clinic is NICE compliant by reviewing its website. A responsible assessment service will be more than happy to let you speak to a member of their clinical team before you commit to an assessment. They will be able to provide information about their assessment process, clinical experience and also help you to decide whether an assessment is the right option for you.
Families often find the advice provided following an assessment to be extremely valuable, so you may want to consider how well the clinic can offer this before proceeding.
Do you provide private autism assessments near me?
We provide autism assessments for children at our clinics across England and South Wales.
Can my child be assessed online?
Research evidence shows that Module 4 of the ADOS-2 can be completed via a teleconference video call with the same validity as when completed face-to-face in a clinic. Module 4 is suitable for children aged 10 and over who are verbal.
Children aged under 10 should be assessed face-to-face, as there is no evidence to say that an online assessment is valid for this age group.
Will an autism diagnosis help my child get extra support?
Under the Equality Act (2010), autism is classed as a disability as it is a “long-term condition that has a substantial impact on day-to-day life.”
Schools therefore have a legal duty for schools to make reasonable adjustments which ensure that the child is not disadvantaged because of their autism.
Reasonable adjustments might include things such as:
- Providing a quiet space
- Allowing the child to leave class if overwhelmed
- Providing own desk or table
- Permitting ear defenders or other sensory supports
- Adapting communication and using visual cues or supports
- Relaxing school uniform policy
- Additional exam time
Schools must also protect the child from direct and indirect discrimination, for example, a child cannot be excluded from a school trip because of their autism.
A private assessment report can also be used as evidence of need during the education, health, and care needs assessment and review process.
An autistic child may be eligible for Disability Living Allowance, and a private assessment report can help outline your child’s needs during the application process.
How should I tell my child about having an autism assessment?
If your child is at a developmental level where they can verbalise the difficulties that they are experiencing, you may wish to let them know that you are considering an autism assessment.
It might be useful to start by explaining that autistic children think differently to neurotypical children and therefore have different strengths and difficulties. It is important that autism is spoken about as a difference than a disorder or impairment.
If your child is not at a developmental level where they can process this level of information, you can prepare them for their observation session by telling them they are going to meet someone who wants to learn more about them.
The ADOS-2 observation is usually an enjoyable experience; you can reassure your child that it is merely a way of the team getting to know them, and there are no right or wrong responses.
How can I access a private child autism assessment?
If you would like to arrange a private autism assessment for your child, you can contact us via our online form or by calling us.
We are also happy to liaise with you regarding the assessment process or offer you free autism screening to ensure that an autism assessment is the right approach for your child.
