Along with the growing awareness of the traumas experienced by neurotypical spouses of adults with Asperger’s autism more and more NT spouses are asking the same questions:
- Where do I find a good therapist?
- Where can I find a counsellor with a deep insight into the realities of being the NT spouse of someone on the autism spectrum?
First, it is important to emphasize that the connection between a neurotypical client and a therapist has a personal nature. If a certain therapist feels good (or wrong) for you, the same might not be the case for another NT-individual. Your own experience and gut feeling is essential. Therefore, we cannot recommend particular therapists neither can we advise against particular therapists. It is your own decision and choice.
We can, however, in general share experiences regarding what an NT spouse should be aware of when looking for a therapist.
Our general experiences are based on reports and feedbacks from thousands of NT spouses from several continents, including North America, Australia and Scandinavia, over the last twenty years.
Firstly, the therapist/counsellor must have a deep insight into autism spectrum disorder, including the long-term effects for NT spouses of living in an intimate relationship with an adult Asperger autist.
This implies the counsellor has a deep insight into Ongoing Traumatic Relationship Syndrome (OTRS) 1 and the Cassandra Phenomenon (CP) 2.
You would not go to an ophthalmologist if you have a heart problem! Different physicians have insight into different specialties. The same applies to counsellors. You need someone with special insight in the tabooed reality of life behind closed doors with a diagnosed or unrecognized Asperger/ autistic partner.
For the moment only few professionals understand ASD and AS behavior ‘behind closed doors’. The non-profit organization FAAAS 3 has pointed out that until then, the needed support and validation (‘SALVE’) 4 will predominantly come from other NTs who have lived the same experiences.
However, it is understandable that an NT spouse can also choose to see a professional counsellor/psychologist. If no one with special insight into OTRS/CP is available in your region it might be an idea to look for a therapist with special insight into Post Traumatic Stress Syndrome. Such a professional may have prerequisites to comprehend the situation of an NT spouse living with the ongoing traumatic effects caused by a partner´s incurable developmental disorder.
Remember: It is OK to ask a therapist about his/her experience, training and education regarding NT-AS relationships before you make your decision.
Maybe you already know a therapist you trust from other contexts? It is OK to print out articles which resonate with you about NT-AS marriage where you highlight the issues you can identify with and bring the articles to your therapist.
Articles useful for that purpose according to reports from NT spouses are:
- Why does my NT/ASD marriage not work? NT-AS Relationships Table 2016
- SALVE: Help for NT spouses whose partner has Asperger’s/ Hf autism
- OTRS / CP Brochure
- Children of a parent with Asperger’s Syndrome/ autism
Sometimes NT spouses report they have been exposed to therapies that made them even worse off. This can happen when seeing counsellors who are not familiar with OTRS/CP 1, 2, who offer therapies that are damaging to the NT spouse, imposing heavy responsibility for the AS partner’s autistic behavior on the NT spouse, telling the NT spouse to prompt the AS partner using exhausting to-do lists, even blaming the NT spouse for the marital problems caused by the AS partner’s lack of developmental maturity. 5
According to FAAAS 3, in order to achieve relief for the neurotypical partner there is currently no alternative to SALVE 4, which is: Supporting, Assisting, Listening to, Validating and Educating about ASD and its impact upon the family unit. Provided the counsellor has a deep insight into OTRS/CP, the counsellor can be a valuable support for the NT spouse.
Secondly, ” it is very useful if the counsellor has had some personal experience of Autistic spectrum disorders. It is impossible to become familiar with Asperger syndrome via a textbook. Firsthand experience is worth its weight in gold.” 7, 8
An NT wife reported the support she experienced seeing a professional NT counsellor who had personal insight into the impacts from Asperger’s autism in her extended family:
“I didn’t have to explain a lot, I was relieved by the counsellor’s validation of my experience.”
Obviously, it is mandatory that the counsellor should be able to separate his/her own likes and dislikes from the counselling. Another NT wife reported:
“The psychologist I have seen grew up with a father with Asperger’s syndrome. I felt very relieved of her insight into the ‘Cassandra Phenomenon’. But after a few sessions she turned around and wanted me to see my marriage from my AS husband’s perspective. It was obvious to me that the psychologist was ambivalent because she loves her father. For 23 years I have walked on eggshells and been forced only to accept my AS-husband’s distorted perspective to avoid his aggression, and I lost myself.”
Thirdly, the counsellor / therapist must be genuinely empathic to your situation.
Only someone with an innate and normally developed mature empathy and compassion for other people should act as a counsellor for clients suffering from longstanding deprivation of empathy and mutual communication in a marriage with a partner on the autism spectrum.
Remember: It is OK to ask the therapist: “What is your experience of supporting family members of adults with or suspected with ASD?’ and “How do you carry out that process of support?”
If you feel uncomfortable about the answers or not believed, take note and leave. You will never be able to convince that therapist of your true circumstances. Because your spouse has a successful career and appears ok outside the home it will be assumed he/she is a “normal” person and you are the one with the problem.
You pay – you have the exclusive right to decide which therapist you request. You make your request clear and the therapist is committed to a professional liability.
There are plenty of good therapists out there. You deserve one of them. The most alarming feedback is from NT-spouses who saw a therapist who is perhaps himself/herself on the autism spectrum or doesn’t understand how someone with ASD can change behavior so quickly between outside and inside the home. According to our experiences this is detrimental to the NT client and brings the NT client from the frying pan into the fire.
An NT spouse reported:
“A social worker in my town recommended me a therapist whom she knew had insight into Asperger’s. I got an appointment but at the first session, I felt very awkward. He didn’t maintain eye contact, didn’t show facial expressions and didn’t seem to grasp anything about my sufferings as an NT wife of an Asperger autist. Only when I asked him about his background regarding NT-AS relationships he informed me of his own Asperger’s diagnosis. End of my session.” 9
Fourthly, if the therapist/counsellor suggests you bring your AS spouse for couple therapy, find another counsellor for yourself alone
Unfortunately, the hope of permanent improvement through couple therapy is false. Only few NT-spouses report on positive effects and the effects soon disappear again. Couple counselling doesn’t work when one of the partners is on the autism spectrum. It is you, the NT spouse, who are asking for support and “SALVE”. You deserve a counsellor who maintains focus on you.
“There is no cure for Asperger syndrome; it is a lifelong disorder. Some couples may hold the hope that counselling will get ‘him’ (the AS-partner, ed.) better but this hope is false. Change is very difficult to produce in the rigid and inflexible world of Asperger syndrome. Changes though are possible when there is incentive, motivation and commitment; these changes, although relevant, are often quite small.”
Maxine Aston 5, 6
“Because Asperger syndrome can be seen as a disorder of insight into thoughts and feelings, it may be very difficult to engage your partner in the sorts of discussions that marriage counselors or family therapists use. Indeed, such therapists may not have heard of Asperger syndrome and may need information from you in order to avoid misunderstandings. You may like to think about other approaches instead – perhaps it will be more useful to talk to a counselor on your own, to have a chance to think through your feelings and decide possible coping strategies.”
Synapse Fact Sheets 10
Last but not least, consider if your doctor, the GP, can support you
Many GPs do have a good understanding of what it means to live with an autistic partner, who by definition has an empathy disorder and lacks the ability for mutual communication. The awareness of the reality experienced by NT-spouses and children is growing.
Positive feedbacks from NT-spouses
NT-spouses having good experience from counselling report about being helped to:
- Regain your sense of self
- Regain your own perception of reality
- Bring back self-belief
- Go through the difficult process recognizing that your AS partner will never get ‘better’
- See that empathy, compassion and human reciprocity are basic, normal human needs and the lack of it is dehumanizing
- See that your low self-esteem and depression is related to the deprivation of affections and human reciprocity
- Realize that your adult AS partner’s developmental disorder and conduct is not your fault, not your responsibility
- Set distinct boundaries in care for yourself and the children. Realize you have a choice; you don’t have to save your partner from the consequences of his/her own behavior
- Free yourself from the role of being a permanent ‘rescuer’ of your AS spouse
- Accept the fact that if your spouse lives in denial or refuses to get professional help there is nothing you can do
- Realize your life doesn’t have to be ruled by your AS partner’s rigid routines and need for being prompted; you have a choice
- See possibilities for you to change for the better for yourself by your own actions
- See sometimes there is no choice to stay
- See you are entitled to a satisfying social life with friends and family independent of your AS partner
- See you are entitled to laugh, sing, dance, seeing friends and feel joy in your own home
- See that an Asperger’s diagnoses is NEVER an ‘excuse’ for physical or mental abuse from an adult with normal IQ and who is able to cover their dysfunction in the outside world
- Realize you are entitled to speak out the truth about yourself being a spouse of an individual with autism disorder; accept your AS spouse may leave you when you do
- Realize the painful fact that you may have to give up friends who do not/cannot respect the tabooed facts about your life as a spouse of an autistic adult whose developmental disorder is invisible outside the home
Negative feedbacks from NT-spouses
NT-spouses having experienced being worse off after seeing a counsellor report about being told:
- “Adults don’t have Asperger’s, it is only children”
- “You married him/her, you knew what you did”
- “He is like all men”
- “But he/she is so intelligent and nice, it can’t be serious!”
- “Never show your emotions”
- Not to interrupt your AS partner from the special obsessions
- Take even more responsibility for your AS partner’s conduct, meltdowns, neglects and other effects of the autism disorder
- To act according to exhausting to-do lists of what YOU have to do – or must not do – to make life easier for your AS partner
- Not to stress your AS partner by expressing your own joy, tears, expectations, sadness
- Not to mention your AS partner’s disorder
- Not to upset your AS partner by contradicting his/her AS-perception of reality
- Not to caress or touch your AS partner
- “Start to read books about Asperger’s autism and get familiar with it! “
(By this time you have already read a whole library of literature about AS and for years you have renounced a great part of your own life taking care of your AS partner; He/she in turn has not yet read a headline or moved the first step to meet you.)
The Burden on NT Spouses and Children
Does Asperger’s Autism get worse with Age?
- Ongoing Traumatic Relationship Syndrome (OTRS) is a name for the trauma-based syndrome, which affects spouses, children and siblings of individuals who have social disorders such as Asperger’s Syndrome (AS) and high functioning autism (Hfa). OTRS is not a mental illness. OTRS is a normal stress reaction to ongoing abnormal interactions within an intimate relationship and family life.
- Cassandra Phenomenon (CP) is a metaphor for the emotional and physical suffering to spouses and children of adult individuals with AS and high functioning autism, because spouses and children are typically disbelieved as they attempt to share the cause of their sufferings with others.
- FAAAS, Inc. , Families of Adults Affected by Asperger’s Syndrome, http://faaas.org/
- SALVE for NTs is: Support, Assistance, Listening to and believing, Validation of what the NT spouses and partners have experienced, Education about what OTRS/CP and AS/ASD really are and the impact on NTs. Read about SALVE here.
- AS refers to Asperger’s Syndrome which is a part of the Autism Spectrum Disorders (ASD). Per definition of the disorder, individuals with AS/ASD do not achieve normal developmental milestones as a consequence of their neurobiological disorder. ASD is listed in the Diagnostic and Statistical Manual of Mental Disorders (DSM-5). In Europe WHO’s classification ICD-10 is used and Asperger’s syndrome, like other autism spectrum disorders, is included in the ICD-10 list of Mental and Behavioural Disorders.
- Neurotypical or NT is a term used in contrast to AS autism/ASD and means ‘neurologically typical’. The term means that the persons referred to do NOT have any developmental disabilities.
- Maxine Aston: Aspergers syndrome in the Counselling Room http://www.maxineaston.co.uk/published/AS_in_the_Counselling_Room.shtml
- Couple Therapy and Asperger’s Autism
- There are a few counsellors who admit that they themselves have AS, yet they believe they can ‘counsel’ NTs and NT-AS couples because they believe themselves they understand the disability. This is a myth. Individuals with AS – counsellor or not – lack an innate and normally developed ToM (Theory of Mind). The Mind Blindness and lack of ToM, which per definition is part of their AS disorder, make them unable to deeply understand someone’s state of mind or emotions. They would not grasp the perspective of the NT partners and the NT partner’s need for social, mental, emotional and physical mutual human connection, which are innate needs of individuals who do not have any developmental disorders. See also note 5 and 6.
- Synapse, Partners of those on the Autism Spectrum
18. 02. 2016
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