How and why to get an autism diagnosis?

Autism

There are several routes to getting an autism diagnosis. Some will get an early diagnosis under aged 5, many will be diagnosed whilst at school and others in adulthood.  There are also many who never get a diagnosis, some don’t realise they are autistic and others choose to self-diagnose.

For some the journey starts because of specific challenges such as speech and language or mental health. Whilst others will be specifically seeking a diagnosis to confirm what they already know.  Everyone will have a different experience of the diagnosis process, there is no right or wrong way to go about it.  The important thing is for individuals to understand their own brain and know if they are autistic or not.

Why get an autism diagnosis?

My children both got diagnosed early in relation to speech and language challenges.  It was an easy choice for us as we knew they would need access to support throughout their education. Needing help at school is a common reason for children to get diagnosed.  I do however appreciate that it can be far more complex for others. 

Whilst I fully understand particularly adults choosing to self-diagnose personally I think a diagnosis is an important step for autistic children even if they are doing well academically.  The main reason I think it’s so important comes down to self-esteem.

When someone regularly faces difficulties and feels different to their peers it can be easy to start to feel like it is their fault or they are ‘wrong’ in some way, this is not healthy for mental health.  Knowing there is a reason they feel different can make a big difference.  In addition if the people around someone know they are autistic they will usually be more mindful and supportive of different needs they may have.  Why we don’t do this for everyone is a rant for another day!

I know some people can be afraid of ‘labelling’ children but the reality is if a person is autistic they are still autistic even without an official label.  For me it is about actually understanding if someone is autistic or not. There are so many misconceptions about autism and sadly negative stereotypes. However if someone is autistic the best way to support them is for them and those around them to understand what autism actually is and the individuals needs.

Some people will be happy to get a diagnosis as it is an affirmation or helps to access the supports needed.  Others can take time to come to terms with a diagnosis. Again everyone has a different journey and that’s fine.

school transition

Asking for help

The first step to getting a diagnosis is asking for help. I know this was probably the hardest step for me as it felt like I was failing as a mother. I know this is rubbish and we should all ask for help when its needed but equally I know for some of us that’s easier said than done.

If you have concerns try and keep some notes, when you are talking to professionals about concerns it can be easy to forget the key points.  Take notes with you to make sure you remember to bring up all the things you are concerned about.  Also take notes when professionals give advice / suggestions as its easy to forget the information. It can be really emotional when you are worried about your child or yourself.  It is fine to take a friend or family member with you for support when talking to professionals.

Every local authority may have slightly different routes / processes. The following people can usually support you to get an autism assessment referral for children:

  • Health Visitors – Registered nurses or midwives who work in the community to support children under five and their families.
  • GP – General practitioner your local community doctor.
  • SENCO – Special Educational Needs Co-ordinator based at pre-school or school.
  • School nurse

In some cases GPs or Health Visitors may carry out a screening interview for pre-school aged children called the M-CHAT (Modified Checklist for Autism in Toddlers).  This will not tell you if a child is autistic but may help indicate if a child could be autistic.

Usually you will be referred onto the community paediatrician and or other specialists such as speech therapists or clinical psychologist. 

Autism Diagnostic Assessments

As a spectrum condition, autism presents very differently in each person so understandably there are different assessments.  Equally there is such a range of ages and abilities being assessed that different types of assessments will be used for different people.   In some cases a combination of assessments will be used. 

Often a team of autism specialists may be involved in the assessment, this could be in one session or in several sessions over time.

Assessments are usually straightforward. They will ask questions about problems your child is having and watch how your child interacts and communicates. They will usually also speak to and get reports from third parties such as teachers or therapists working with your child and observe the child in more than one setting.

Assessments that might be used include:

  • An Autism Diagnostic Observation Schedule (ADOS)
  • Diagnostic Interview for Social and Communication Disorders (DISCO model)
  • Autism Diagnostic Interview – Revised (ADI-R)
  • Developmental, Dimensional and Diagnostic Interview (3Di)

They all assess against a set of criteria for autism, found in diagnostic manuals ICD-10 and The DSM-5

Whilst different diagnosticians use different methods there are specific guidelines that need to be followed to diagnose autism. These are the:

See the NICE guidelines here.

To give you an idea here is how the process works for children in Bristol at the Autism Hub.

ADOS assessment, ADOS score, autism diagnosis

Getting a diagnosis

Following the assessments the diagnostician will tell you if they think your child is autistic or not.  This can be on the day of the assessment or at a later date. They should then send a written letter or report. If you are given a diagnosis that letter / report is your official diagnosis proof so it should specifically say they have been diagnosed and any details of the diagnosis.

If you are confused by wording or detail in the report / letter do follow up and ask to talk to the diagnostician who will be able to explain.

Getting a diagnosis as an adult

Again each area may have a slightly different process for adults going through an autism diagnosis. In most cases you will be expected to complete a questionnaire about yourself and any difficulties you have.  The diagnostician may also want to talk to family or friends who knew you as a child.  In some areas getting a diagnosis will enable you to access information and support services.

Some adults don’t feel they need access to support but may want to better understand their own needs and may choose to self-diagnose rather than go through the assessment.  

I think it is natural for parents of autistic children to think am I also autistic. For many getting their child’s diagnosis means they learn more about autism and in turn realised they themselves are autistic. For others we see autism in our extended family and friends where we didn’t see it before.

Having said that all traits that are seen as autistic traits are also just human traits. This is why we often hear the phrase ‘everyone is a little autistic’ but the reality is they are not. You either are autistic or you are not, having an autistic trait doesn’t make you autistic.

It can be very hard to identify differences in autistic adults as many have learnt to mask feelings / natural behaviours because of the way people can react negatively towards them. I did a bit of reflection for myself, whilst I do have some traits like wanting to be in control and liking routine. These are not big issues for me when I don’t get them. I am comfortable that I am neurotypical not autistic and I think it is an important question that we ask ourselves.

A good starting point if you want to think about if you may have autistic traits worth exploring is this quick Autism-Spectrum Quotient Test (keeping in mind it is just a guideline to see if this is something to explore).

Another useful online test you can do to identify if you have common autistic traits.

What is autism

Going Private

The NHS is responsible for diagnosing autism in UK however some do choose to get a private diagnosis. Often this is because the NHS waiting list is so long. If you do want to get a private diagnosis it will cost somewhere between £1,000 – £3,500 and even then may not provide access to services.  Some council and NHS services will not accept private diagnosis even if they meet the NICE guidelines so check what the situation is in your area first. If you do choose to get a private diagnosis then it is recommend that you remain on the NHS waiting list as you may also require the NHS diagnosis. More information on private diagnosis is available in the post from Bristol Autism Support.

What if you don’t get a diagnosis

In some cases you can go through the assessment process and not receive a diagnosis.  It may be that the assessment identifies some autistic tendencies or social communication difficulties but not enough to meet the criteria for a diagnosis of autism or that a diagnosis is not appropriate.  They may make another diagnosis if more appropriate.

In other cases you may need further assessments or be referred to other professionals such as a psychologist. Make sure they are clear with you what your next steps are.

Post diagnostic support

Following a diagnosis most local authorities offer parent training in autism (usually Earlybird or Signet). For adults a support service or group may be available.  In some cases you will be automatically referred in others you may need to make a self-referral. Information on what is available in your area should be on the local authority ‘local offer’ pages of their website.

If you are struggling with specific issues your Paediatrician can make further referrals to specialist such as dietitians.

What to do while you wait for an autism assessment / diagnosis?

Waiting times for autism assessments are ridiculously long in some areas so here is my best advice for what to do while you are waiting:

Find your tribe – check out local SEN and Autism support groups (Facebook is a great place to start). Most charities or parent support groups will be very happy to support you whilst you are waiting for an assessment.  Parent support groups are great places to talk to others that have been through or are going through the same process. You can always join my Network.

Learn about autism – even if you / your child does not end up with an autism diagnosis there are autistic traits that led to the initial referral such as social communication difficulties or sensory processing.  Learning about autism may well help you support these difficulties. Also autism is very common so the more we all know about autism the better.

Try autism strategies – take a leap and try autism strategies like visual aids, routines, TEACCH or Attention Autism. Nearly every good autism support strategy is great for any child so you won’t be doing any harm trying them out.

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