These are the most common questions that parents ask our Autism Helpline advisors.
If you need more advice, just call our Autism Helpline on 0808 800 4104.
1. I've been referred to a speech and language therapist about the possibility of my daughter having autism. Now I've been told I have to wait three months to see a clinical psychologist. Why is it taking so long if the speech and language therapist was carrying out the assessment?
The speech and language therapist your daughter is seeing is probably working as part of a multi-disciplinary team which includes the speech and language therapist, clinical psychologist and others. If this is the case it is likely that you will be referred for separate appointments with each of these professionals before your child's diagnosis is confirmed. Check with the hospital or clinic you are attending to see if this is the case.
2. My son has been assessed to see if he has autism but the professional concluded that he does not. Am I entitled to a second opinion?
Your GP does not have to refer you for a second opinion but it would be good practice for him or her to do so, especially if the reason for your child's difficulties has not been identified. You should speak to your GP about this.
The professional who carried out the assessment may be willing to refer your child on to a tertiary level service if they feel that your child is a complex case. This may involve an out-of-area referral. If an out-of-area referral is made, you will be asked to attend a diagnostic service that is not based within your primary care trust (PCT). Often there is a funding issue which can delay the process of getting a second opinion. In some cases, funding for out-of-area referrals is refused.
3. My daughter has been diagnosed with autism. Will I automatically get extra help for her at school and support from social services?
Unfortunately, a diagnosis does not automatically secure help from the local authorities.
Help at school is based on need, not diagnosis. In England and Wales you can speak to the school special educational needs co-ordinator (SENCO) about getting extra help for your child at school before she is diagnosed. In Scotland you should speak to the school's learning support teacher. A diagnosis can, however, help you to access autism-specific support (eg a learning support assistant with training in autism). See www.autism.org.uk/education for more information on education and the extra help available in school, or telephone our Autism Helpline on 0808 800 4104.
The Children's Act 1989 and The Children Scotland Act 1995 impose a duty on social services to provide services for children in need. Your child does not have to have a diagnosis to be considered in need. The Acts refer to any child who needs help from social services to keep them safe and well. You should contact the social services department to request that they carry out an assessment of your child's needs in order to access their support.
Our Helpline has written Social services: getting help for your child (England and Wales) and Social services: getting help for children and adults (Scotland). These include a template letter to use when requesting an assessment. Contact the Helpline on 0808 800 4104 for paper copies.
4. The diagnostician said that they would contact social services and the local education authority about getting support for my son. I haven't heard anything from either of these authorities. Should I continue to wait?
You may wish to contact your local education authority and social services department yourself, even if the diagnostician says they will do this for you, as it may take them some time. Social services and the local education authority will then contact the diagnostician for information if they feel it is needed.
5. I have heard about The National Autistic Society's own diagnostic service, The NAS Lorna Wing Centre for Autism. Would this be the best place to take my child to be diagnosed?
The NAS Lorna Wing Centre for Autism is a specialist diagnostic and assessment service, so referrals are now usually at tertiary level and are made by professionals who consider that a specialist opinion is necessary. Individuals with a complex presentation of difficulties are the most likely to be referred. These are usually adolescents or adults. Most young children are diagnosed by local multi-disciplinary teams but occasionally children with complex needs, or about whom professionals disagree, are referred for a second opinion.
6. Does everybody with autism need to be diagnosed?
In our experience, many people with autism and their families benefit from having a diagnosis. Having an explanation for the problems that a person has been experiencing, possibly for many years, can bring a sense of relief. It also provides you with the ammunition to argue for the most appropriate services.
There are occasions when people would prefer not to have a formal diagnosis. Sometimes this is because a parent feels that their child will be able to make greater progress if they do not think of themselves as having a disability. We also know of adults who suspect that they may have autism but would prefer not to be formally diagnosed. For these people, knowing the possible cause of their problems seems to be enough.