Speech Language Assessment, Autism And Transition

One of the most alarming aspects of the exponential rise in the number of children referred to gender clinics over the last few years is the steady rise of those on the Autism Spectrum, who now make up a staggering 50% of referrals to the Tavistock clinic in London. An exhaustive analysis of the reasons for the particular susceptibility of this group to the ‘born in the wrong body’ model as a way of framing their experience, is presented in this important thesis which every parent of an ASD child should read. (The author, Elizabeth Belle-Abraham, Ph.D, is the parent of a child with autism, writing under a pseudonym for medical privacy.) Our thanks to Stop Trans Chauvinism for publishing this important piece.

Accepting a cross-sex self-identity at face value from any child or adolescent denies them the full level of care and assessment we would expect as part of ethical healthcare practice, but this is particularly true for young people on the autism spectrum or with other brain conditions which affect learning, including those who have experienced trauma, and those with psychiatric conditions. One crucial area of assessment is in the understanding of words and concepts, not only in the understanding of the concept of changing sex, but also the ability to understand and agree to a “gender reassignment” treatment pathway. Without assessment, hidden speech and language impairments in any child or adolescent will remain hidden.

We are very grateful to Jillian Whitefoot (a pseudonym) for this brilliant guest blog which provides comprehensive advice for parents on what they have a right to expect from gender clinics. Jillian is a professional Speech and Language Therapist from the UK. She has written this piece to arm parents with information about normal protocols and the particular importance of the role of Speech and Language therapy in the area of transitioning. If you would like to know more about the speech language protocols and professionals in your area, please use the contact form and we will pass queries on to Jillian. 

Speech–Language Therapy and Transitioning

Informed consent; understanding language and transitioning.

Jillian Whitefoot

* All views my own. Position Statements on Speech Pathology in Mental Health Services and Autism Spectrum Disorders can be requested from Speech Pathology Australia, The Royal College of Speech Pathologists (UK), and the American Speech-Language-Hearing Association. Best Practice Guidelines for Early Childhood Professionals can be requested from the relevant National Professional bodies.

I am a speech and language therapist who has worked with children, adolescents and adults for many years. I am troubled that children and vulnerable adults with possible receptive language and pragmatic delay/disorders are being overlooked when it comes to the explanation of what transitioning to a different gender will involve.

When we assess language, we look at developmental norms in attention/listening, understanding language (receptive language), expressive language (vocabulary and putting words together to make sentences), and how children use language, that is, pragmatics and social communication skills.

Language impairment is often a hidden impairment, as sometimes children and young people can nod, or follow the crowd without understanding exactly what is being said in the classroom or elsewhere. In fact, a high proportion of adolescents in psychiatric facilities were found to have an undiagnosed language disability/disorder (1) and this is also true for young offenders (2). The association between early childhood speech and language functioning and young adult psychiatric disorder, especially social phobia, is high (3), (4).

Speech and language therapists are sometimes called to be expert witnesses in court for people with a hidden language impairment e.g. adults with a learning disability/intellectual disability or specific language or pragmatics impairment, either to explain the level of the person’s language understanding to the court or to re-frame questions or statements in a way that the person will understand. Generally, most basic language structures should be in place by about age 7, but language and pragmatic development continues to improve up until approx. aged 19-21 (4).

At a young age, children learn from their care-givers/parents to relate in the to-and-fro of conversation – which involves all of the non-verbal, physical and situational cues – after all you need to have someone to communicate with and something to communicate about. At about 9m-1 year, babies and children begin to use first words, (understanding coming before speech), then understanding two key information-giving words in a sentence at about age 2, then 3 key information-giving words at about age 3. An example of a 3 keyword information-giving sentence would be: Bring me the shoe on the bed. (Key words underlined – when there are lots of different things in, on and under the bed/chair etc.).

Concepts of time and sequence such as first/next/last, then before/after, should be understood at about 3-4 years’ old. (6). Before/After coming developmentally after first/next/last. In/on/under prepositions should all be understood by about age 3. Pronouns he/she should also be understood by about 3. However, nouns girl/boy (understood about 2-3) are not recognised as being connected to genitalia – they are recognised by gender-related items like hair and clothing and as terms being connected to Daddy or Mummy. *There is normally a bit of an uproar if I refer to an unsexed animal in a story e.g. squirrel, as a ‘she’. This is at about age 3. ‘He’ is the preferred default pronoun – children have already picked that up. For children with Autism spectrum disorder, (ASD) pronouns are learned much later, at about 6ish, in my experience, and may have to be specifically taught.

‘Why..because’ clauses and ‘If.. then’ explanation clauses are understood at about 3-4 ish, but again, these are of very simple sentences in the immediate ‘here and now’ or recent past. Complex negatives like ‘isn’t’, ‘can’t’ and ‘won’t’ are also learned at about 3ish. (6)

Past tense is understood and used before future tense. Abstract concepts like ‘yesterday’ ‘tomorrow’ ‘next week’ or ‘next year’ are understood much later, starting at about age 5-6. (6)

The effect of trauma on the developing brain can affect language development, e.g. flight/flight/freeze response can sometimes affect semantic memory e.g. which things ‘go together’ or auditory memory, because holding and remembering long spoken sentences in your head just isn’t possible when you are frightened or in anxiety mode.

Sometimes people have a specific auditory memory problem – there are many specifics in language assessment that can be affected in isolation. Another example would be a specific word-finding problem – people then tend to go into careers like accounting, in my experience, where the likelihood of verbally explaining a situation is lessened. Sometimes people go through the majority of their adult lives without realising this is the underlying reason for their problems in ‘getting words out’ or expressing themselves.

Another specific language difficulty would be a pragmatics difficulty e.g. understanding and inferencing social situations; understanding non-literal language like hints, jokes and idioms/metaphors. For these people, understanding what a man or a woman is, may be literally taken as what they may see on TV and in magazines e.g. stereotypical clothes, hair, behaviours etc.

People at the high end of the Autism Spectrum (what used to be called Asperger’s syndrome), tend to have high anxiety in social situations because of these pragmatics and social skills difficulties. Sometimes, this is not diagnosed until a person is well into adulthood or middle-age and often not at all.

People with Autism Spectrum Disorder may also have sensory processing difficulties, which may result in difficulties of not understanding where your body is in space, or of feeling under/over-sensitised to touch/sound/noise/smell. Dyspraxia, which is a disorder in motor-planning movements, can also affect feelings of not having control over/being alienated from your own body movements and functions. An Occupational Therapy sensory assessment is helpful here. It goes without saying that a Psychology assessment is necessary, addressing the cognitive abilities of children to think and understand (see Piaget, Erikson stages of cognitive development) and also looking at a differential diagnosis regarding other mental health disorder triggers, including physical or sexual trauma, hetero/homosexual related sexual gender norms in society and peer pressure/social contagion. Social workers are invaluable here, too, in my opinion.

A transdisciplinary assessment and intervention approach has been advocated by Speech-Language-Hearing Professionals for Early Intervention, Autism and Intellectual Disability, as best practice (refer to Speech Pathology Australia, The Royal College of Speech and Language Therapists (UK) and the American Speech-Language-Hearing Association Position Statements). Example shown (5).

So, how to explain the life-long ramifications of medical/surgical procedures to someone who has no conception of sex i.e. male/female, who doesn’t understand pronouns, who doesn’t understand ‘If .. then’ explanations, who doesn’t understand ‘don’t/won’t/can’t’, who doesn’t understand ‘next week’, let alone the rest of their life, who doesn’t understand that the reason that they feel like an outsider may be because they are not picking up on social cues in communication, not that there is anything wrong with their body. Add adolescence, sexual identity and social conformity/finding your true identity into the mix.

Full language assessment as needed (to include pragmatics assessment as needed), as part of collaborative team assessments are advocated for Early Intervention, Mental Health, Intellectual Disability and Autism Spectrum Disorder and others with communication difficulties e.g. Stroke:

i. As part of the human rights of the child/adult – in order to explain to them the results of their choice (or for finding out if they are capable of making that choice yet)
ii. In order to aid differential diagnosis so that:
iii. health and social work professionals can start a course of therapy that will address the underlying needs of the child/adolescent/adult, with the aim that the intervention works in the best interest of the child/adult.

Lastly, the principles of Informed Consent and Evidence-based Practice are enshrined in ethical healthcare practice. It is your right, as parents, to ask for full information in a way that you can understand, regarding referral, assessment and treatment protocols for any therapeutic or medical intervention. That includes asking for a consensus on assessment and diagnosis from each profession, information on evidence-base for treatments and information on long-term follow-up research on medication and social transitioning. The risk and clinical governance panel of each private, public and not-for-profit organisation should also have this. At a local Government level, there will be a statement on healthcare provision including medical ethics. Please look at the four principles of medical ethics (7) in the reference section below. Check if your child’s recommended treatment is following these ethical guidelines.

References:
1. Clarke, A. (2006). Charting a life: analysis of 50 adolescents in a long-stay mental health unit. Conference Proceedings, 17th World congress of the International Association for Child and Adolescent Psychiatry and Allied Professionals. Melbourne, Australia.
2. Bryan, K. (2004), Preliminary study of the prevalence of speech and language difficulties in young offenders. International Journal of Language and Communication Disorders, 39:391-400
3. Beitchman J.H et al (2001a), Fourteen year follow-up of speech-language impaired and control children Psychiatric outcome: Journal of the American Academy of Child and Adolescent Psychiatry, 40: (1), 75-82.
4. Phelps-Tarasaki D, Phelps-Gunn (2007) Test of Pragmatic Language, 2nd Edition (TOPL 2) Austin: Pro-Ed.
5. Best practice guidelines ECIA (Early Childhood Intervention Australia) http://www.ecia.org.au/resources/best-practice-guidelines
6. Lanza, Flahire (2012). Linguisystems Milestones Guide. Linguisytems Inc.
7. Medical Ethics (taken from a Stanford website as it relates to reproductive rights, but the four principles remain the same). https://web.stanford.edu/class/siw198q/websites/reprotech/New%20Ways%20of%20Making%20Babies/EthicVoc.htm

4 Comments

  • EndTheHarms Reply

    It is important to note that new ‘Initial Clinical Guidelines for Co-Occurring Autism Spectrum Disorder and Gender Dysphoria or Incongruence in Adolescents’ were published online on 24 October, 2016. They can ‘also be useful for adults with GD and ASD’.

    http://www.tandfonline.com/doi/full/10.1080/15374416.2016.1228462

    Excerpts from the new guidelines:

    – When assessing, autism specialists should collaborate with gender specialists on patients where GD and AS co-occur.

    – Assessing executive function/future thinking-skills, social awareness are important.

    – on p6, how “ASD-related symptoms can sometimes create or intensify an identification with GD. Rigid, overly concrete thinking (ie black and white thinking) in adolescents with ASD and milder gender concerns may lead some… to assume that their gender nonconforming interests/traits imply full GD and a need for transition. These young people may struggle to see or consider an “in-between” solution, such as being a feminine male or “gender queer.” Gay or bisexual adolescents with ASD may concretely assume that their sexual attraction to the same gender means that they must be a different gender. …” They should be helped to realize that “there are a range of options/outcomes…”

    – on p7, “Clinical work may help adolescents explore whether they might be more comfortable with their body than they originally assert and/or whether they might feel comfortable identifying somewhere outside of the gender binary (i.e. the “gender spectrum”). A focus on comorbid symptoms may be helpful during this phase, such as treatments targeting executive function (e.g., flexibility/big picture thinking), communication, social cognition, and so on. By providing concrete psychoeducation about how gender for some people can be fluid, not just binary and physical, and concurrent intervention targeting flexible thinking and self-awareness, some individuals with less urgent gender presentations may realize that full gender transition does not fit them. These young people may become more comfortable with a less binary solution, such as maintaining a female body while expressing some male-typical interests/behaviours.”

    – on medical treatments, p7, “More caution may need to be taken in this population when deciding on medical treatments that may have irreversible effects given the presence of ASD-related deficits in future thinking and planning. Because it is often harder for an adolescent with ASD to comprehend the long-term risks and implications of gender-related medical interventions, consenting for treatment may be more complex in this population.”

    – on p 8, “…unrealistic expectations… Unrealistic thinking about the transformational possibilities of medical interventions may be followed by disappointment/hopelessness, when a young person’s expectations for their body (or others’ perceptions of them) fall short of reality.”

    – “Primary themes include the importance of assessment for GD in ASD, and vice versa, as well as an extended diagnostic period” and “Whenever possible, it is important to obtain additional report from other sources (e.g., parents), as communication, self-awareness and self-advocacy skills may be vulnerable in adolescents with ASD.”

    – At end, p10: “…given executive function and social cognition weaknesses in ASD, … there is a need for developing ASD-specific methods for obtaining and assessing consent for medical-related gender treatments.”

    The guidelines were drawn up by a team comprised mostly (91%) of gender clinicians. There seemed attempts within the text to negotiate to accommodate different perspectives, and things about which it was reported that agreement was not found.

    Surely there are profound ethical questions surrounding the vulnerability of ASD people to feeling out-of-synch in the world, or ill-at-ease in their bodies, or ill-equipped in a world of gendered social role expectations, and thus susceptible to promises of being able somehow to push ‘re-set’ and create a new self. ASD girls, particularly those for whom dyspraxia is present, can feel woefully ill-equipped at picking up what’s culturally expected for ‘girl’, or ‘feminine’. Combine these with ‘overly concrete thinking’ as described above, and the practice of unquestioningly rubberstamping ASD youth toward ‘medical transition’ would seem a failure of duty of care.

    So it has recently been learned that 50% of the Tavistock’s young patients seeking a change of gender are on the autistic spectrum, and that twice as many of the total number of their young patients are now girls as are boys. (Tavistock director Dr Polly Carmichael remarked of this spread amongst girls and young women in April, “The sheer numbers… a phenomenal, unexpected 100% increase this year… in the past, more natal males to natal females were being referred.” – BBC Woman’s Hour)

    Is anyone caring to reflect?

    Who is even aware of these new guidelines?

    Will anyone apply any brakes to the transition trend?

  • Operator J Reply

    EndTheHarms – It seems as if the usual rules of Clinical Governance, Risk Management, Informed Consent and Medical Ethics don’t apply to this group of patients, or to the clinicians that have been tasked with their medical and social care. Thanks for providing the links.

    I predict huge class actions against medical entities that have provided treatment to children and adolescents without comprehensive assessment and explanations of likely outcomes, simply based on non-compliance with existing medical and legal protocols. This hasn’t hit the allied health and social work professions yet, (or the lawyers working in Risk Management), and they will be forced to put forward position statements outlining policy. When that happens, interesting times.

  • Operator J Reply

    It’s very clear that a duty of care is being breached.

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