What is mild autism?

Current autism diagnosis in Europe still refers to ICD-10 /DSM-IV where autism is divided into several categories like infantile autism (Kanner autism), Asperger’s syndrome, high-functional autism and pervasive developmental disorder not otherwise specified (PDD-NOS) which addresses to autism as social communication disorder without significant stereotypical behavior, restricted interests or rigid routines.

In the US, the DSM-V is already introduced merging all subtypes of autism into autism spectrum disorders, and determining severity or degree of support with additional numbers.

Most of the subtypes mentioned above are grown historically. Asperger’s syndrome has been called after the Austrian psychiatrist Hans Asperger while Kanner autism has been called after Leo Kanner. High-Functional Autism (HFA) is said to be classic autism from early childhood but with higher intellectual abilities (Tony Attwood doubts the differentation in HFA and Asperger’s syndrome is necessary). PDD-NOS covers the atypical autism when core autism symptomes are present but the development is atypical (which is often the case with 47,XXY-people).

In any case, there are a few key features of autism present in all subtypes:

  • enhanced sensitivity to sensory stimuli (sensory processing disorder, high emotional sensitivity, impaired gross and fine motorics) as „intense world syndrome“
  • different way of thinking, oftentimes pattern or visual thinking
  • difficulties to pick up social cues, prosody, facial expressions, reading between the lines

In some journals, self-support guides and parental reports, Asperger’s syndrome and PDD-NOS are considered as mild autism, attempting to euphemize the consequences of this diagnosis.

The perspective of mild autism may arise from the absence of

  • intellectual disability (i.e., IQ < 70)
  • rigid routines and rituals, stereotypes and repetitive behavior (making everydaylife and employment difficult to organize)
  • inability to speak
  • necessity to have full-time health care or special education/schools.

However, if you ask people with Asperger’s or PDD-NOS themselves, they will probably answer very different how severe they are affected. A study of Asperger’s and HFA asking them about their life quality has shown that the entire lifetime was characterized by ill-defined social development. Social difficulties are highly dominating throughout childhood and youth and will slightly decrease during adulthood. Growing up, the motivation to encounter social contacts increases but friendships are still relatively seldom reaching adulthood. The lack of partnership is specific for HFA/Asperger’s. With respect to therapy and support, comprehension, acceptance and emotional support are considered as most helpful for these persons.

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Even if someone with Asperger’s syndrome seems to function well in everydaylife, they might suffer from difficulties having and maintaining friendships, from continuous misunderstandings and erraneous picture of their personality. Someone who tends to talk in monologue might be perceived as arrogant and selfish while the opposite is actually the case. What you don’t realize, either, is the degree of sensory processing disorder. They may feel painful when background noise is given and are unable to have a conversation in a loud environment, which is a serious problem going to a busy party, into a loud restaurant or to a concert but also at work when many distractions are present.

You may not notice they have great difficulties with executive functions like planning, organisation, dealing with sudden changes, new things or simple housework stuff. They might have difficulties to accept a phone call or to call a stranger as it is often the case with public authorities. They would enjoy many opportunities but are unable to predict the unexpected to realize it.

As a summary, mild is a relative term because it is a judgement from outside.

  • Some severely autistic people want to be freed from their cage – they’re suffering from high amounts of incoming sensory stimuli.
  • Other severely affected autists may deal better with their situation and perhaps don’t consider themselves as severely affected.

The same holds true for so-called high-functional or Asperger’s or PDD-NOS autists:

  • Some of them might deal so well they are not even officially diagnosed. They have a job, partnership, kids and are satisfied with their life quality.
  • Some are diagnosed soon or later during their lifetime but are still able to manage well their situation.
  • And quite a lot of them are considered to have mild autism but suffer from lacking comprehension and acceptance.

If they tell about their suspicion or even official diagnosis, nonautistic people tend to imagine stereotypic pictures of classic autism and are unable to transfer this prejudice to their close friend or colleague or son/daughter. They may look at their „confession“ as an excuse instead of a reason for their odd behavior. They still believe it would be sufficient to „change the attitude“, „pull one’s socks up“ and „buck up“. To be seen as someone who pushs too hard is very disappointing and hurting for people with „mild“ autism. Life is difficult enough. Comprehension would relieve the lonely pain.

So if you talk or write about mild autism, especially about someone you know or want to describe, just ask them before if they agree with you.

Difference diagnosis and effect on support

I don’t want to spread clichés, so please correct me if I’m wrong. However, if I look at the institutionalized structures, support groups and further advice for people with disabilites in general, also referring to the Disability Act guranteeing the rights of disabled people, there are much better conditions in the United States than in Europe. In Europe, the fundamental rights are presented in the constitution law and in the declaration of human rights. There is also a UN convention concerning people with disabilities which was signed by the Austrian Government in 2008. Anyway, Europe is obliged to treat these people in a similar way like in the USA:

Believe in your strengths and doubt your weaknesses, otherwise they will win.

If you invest in strengths, the weaknesses can be overcome. It’s benefit thinking, not deficit thinking. In Europe, especially in Austria (not to speak from countries in eastern Europe …), people with disabilities are seen as disability instead of benefitting from their strengths. Companies prefer buying themselves free instead of employing a person with a disability. There is too much prejudice and probably thinking in terms of „how much does it cost to modify the working place“ or taking special care of that person. They are seen as ballast and talents and special interests could be easily overlooked.

To my current knowledge, picture of autism in the USA is quite different from UK, Germany or Austria, except for some positive exceptions like companies who employ especially autists to benefit from their computer abilities or general ability to focus on their special interest in a very rigide way; which could be seen also critical as stereotypic picture of autists as computer nerds could be reinforced. Otherwise, numbers are disastrous concerning unemployment. Probably 80 % of Germans within the autistic spectrum are without job, about 40 % for a longer time, in UK only 15 % have a full-time job, some references in Austria even say nearly 100 % are unemployed. What a waste of talent!

As an autist you could have a great knowledge in your special interest, enhanced perception of details which could be used for detecting mistakes and many of them are also visual thinkers or good in expressing themselves in a written form. I can’t list all the advantages people in autism spectrum have – there are better resources than me, e.g. Temple Grandin, Rudy Simone or numberous blogs from autists all over the world who show you their ability. Tony Attwood, e.g., made a list of positive traits and characteristics of autism.

Main problem is however that talent and knowledge could be overwhelming but bad communication skills tend to be present in the foreground and overlap the better skills. And that’s also true for some Klinefelter’s though unemployment rate appears to be not such high as with idiopathic autists. However, irrespective of the underlying mechanisms and resulting diagnosis – if you have difficulties with social communication and interaction, people will likely underestimate your potential.

I really like Christopher Nolans ‚Batman trilogy‘, I could watch it every week, and I especially like the first part.

But it’s not who you are underneath, it’s what you do that defines you.

Though I’m inclined to agree with that statement, it’s appears in another light if you look at in the perspective of someone with impaired social skills. It’s his behaviour surprising, confusing the employer and will likely turn him into rejecting the respective person.  He could have good skills in his area of expertise but he will be unable to sell well in front of colleagues and bosses.

Here is the point where the diagnosis fits in, now with focus on Klinefelter’s syndrome and especially these ones fulfilling many but probably not all autism criteria. The child, adolescent or adult within Klinefelter’s spectrum  could have nearly the same difficulties in social communication and interaction like the child, adolescent or adult diagnosed with autism spectrum condition. However, there is not any handbook or advice for Klinefelter’s children and as long as they don’t let them be diagnosed with autism as well, they will not obtain respective support.

For an adult with Klinefelter’s syndrome revealing the same symptomes like Asperger’s syndrome, it plays a subdominant role whether childhood fits into the clinical picture of Asperger’s. It’s more an academical question if classic autistic traits could be observed. The adult wants to know how to manage current life, in the 40s or 50s. Most of the research deals with children and adolescents, not with adults, unfortunately, and there is little known about the effects of testosterone therapy on adults starting in adulthood, with respect to the behaviour. Most of the testosterone benefits do not affect the diagnose criteria for autism though improving relationship to peers was observed in studies. Bad communication skills could probably endure the therapy and maybe still present after years of testosterone substitution. Moreover, sensory integration disorder is also present with Klinefelter’s and could affect the working environment in a class room or office, too.

So there are two ways to obtain support for men with Klinefelter’s syndrome.

  • Either Klinefelter’s are generally tested for autism (and ADHD though the majority will obtain ADD, if present) and further strategy is to follow the approach for autists …
  • or we need just similar structures like in USA, with detailed descriptions of behavioral and sensory issues which are probably not related to testosterone deficit, and subsequent guidelines how to make things easier for concerned persons in school, at university, on the job and in everydaylife.

As long as we do not have these structures, there will be frustrated some, not all men with Klinefelter’s who suffer from many similar difficulties like people with autism but they just have the „wrong“ name of their diagnosis and will be misunderstood or even ignored.

People with autism and Klinefelter’s syndrome share two of the main criteria for autism: They tend to avoid eye contact and suffer from enhanced sensitivity to sounds, movements or touch, but could also benefit from their enhanced detail perception and ability to focus on their special interest.

Of course, there are differences, e.g. in brain architecture, but as already mentioned, from a current point of view, it only plays an academical role and is not an excluding criteria for autism, as long as it is not proven that testosterone could cure all autistic-like traits in Klinefelter’s spectrum.

Just to sum up a bit:

I strongly recommend to believe in your strengths. It does not make sense to solely focus on your weakness.

Good communication skills are important but should not distract from a person’s talent. For communication, you always need two persons. Use your language as precise as possible.  Don’t be upset if opinions are expressed in a direct and honest way. Smalltalk and wrapping criticism in a smooth way are probably not our best skills.

We need a better understanding of what Klinefelter’s syndrome comprises with respect to sensory and behavioural effects which are not covered by testosterone therapy itself. As a result, we could develop similar structures and guaranteed rights for Klinefelter men, too.

Long way to go but avoiding a long rocky path will continue status quo which is – in my opinion – not satisfying. And aside from Klinefelter’s syndrome, prejudice is also given for ADHD and autism. We are all in the same boat.

Stay tuned and spread the word !

Comma or hyphen?

Salman Rushdie wrote about his book title „Osten, Westen“ that the comma is crucial: He is the comma.

I feel similar as a diagnosed 47, XXY Karyotype.

I am not able to put myself in the position of many concerned persons with extra X chromosome since I don’t want children yet. I do not have relationship problems because of this either. A lot of XXY males suffer from testosterone deficit. I just suffer from lack of power during sport activities or reduced gain of muscle strength.

Otherwise, I’ve always been more the thinker than a body man. Many concerned persons suffer from dyslexia while I never was at war with orthography and grammar. I love reading, writing as well as foreign languages. I could write all the day – and I also love to create new words and to write in both staccato and tapeworm sentences.

A lot of entries in respective forums deal with testosterone replacement as main issue, to become *more* male. However, for me it feels right to have this oversensible *feminine* way to think as it led to a pronounced sense of justice. I’m even happy about not belonging to agressive and violent men. I don’t need bell-wether fights to impress somebody.

On the other hand, I tend to communicate much better with autists as with neurotypicals. I recognize myself in so many ways to think and act. Fortunately, my bag is not packed with so many things like rigid rituals, extreme sensitivity to light or skin, monotone eating behavior or pronounced stimming behavior. That picture fits into the studies about XXY men who tend to have a lack of inhibitory skills (oversensitivity) but less pronounced stereotypes.

Many if not a slight majority of XXY men does not fit into the autism spectrum. I’m not sure where I fit in but I discovered more mutualities in Asperger’s biographies and everyday life descriptions than in those of XXY men since their life went the usual way.

I am the comma between the syndromes – or even more: Am I the hypen?

Since I know about possible connections, I am interested in both syndromes. I scan the web for differences and mutualities. For XXY men, there is not a adequate behavior therapy. Maybe they can learn from therapy approaches for Asperger Autists as they share some traits.  The concerned XXY men do not care about the name of their unusual behavior – they seek for appropiate help.

Reizüberflutung

Negative Umfeldeinflüsse wirken wie ein Verstärker. Wer nicht wie ein Fels in der Brandung steht, wird fortgespült.

Sensory Processing Disorder (SPD)

Wahrnehmungsverarbeitungsstörung heißt die sperrige Übersetzung dessen, was man auch Reizüberflutung nennt. Es gibt sie bei allen Sinneswahrnehmungen:

  • taktil (Berührungsängste, unterschiedliches Wärme- und Kälteempfinden)
  • auditiv (Geräusche, Unterhaltungen)
  • olfaktorisch
  • visuell (auch Licht)
  • und nicht zuletzt auch emotionell
  • auch die Überflutung mit Gedanken zähle ich dazu – wenn so viele Gedanken auf einen einprasseln, dass man sie nicht mehr verarbeiten kann, nicht mehr priorisieren kann, was wichtig und unwichtig ist

Statt SPD könnte man auch Filterstörung sagen, denn die Informationen nach Wichtigkeit zu filtern, daran hapert es bei hypersensiblen Menschen.

Ich schildere vor allem die auditive Reizüberflutung, die bei mir von den Sinneswahrnehmungen her am stärksten ausgeprägt ist:

Es gibt entbehrliche und unentbehrliche Reizüberflutung.

Unentbehrliche Reizüberflutung ist wohl der Lärmpegel in einem Lokal. Menschen unterhalten sich, wer würde es ihnen übelnehmen? Vielen Menschen gelingt es, den Umgebungslärm auszublenden; sie unterhalten sich einfach weiter; einigen Menschen fällt dies schwerer; sie brüllen gegen den Umgebungslärm an, die Diskussion wird mühsam; dann gibt es Menschen wie mich, für die jeder Nachbartisch die gleiche Lautstärke hat. Geräusche wie knallende Biergläser, Wortfetzen, sich erhebende Stimmen – sie gelangen in unverminderter Intensität zu mir, vermengen den Geräuschbrei zu einem unverständlichem Konglomerat, in dem ich gar nichts mehr verstehe. Die Reizüberflutung steigert sich bis zum Overload. Bis das Verlangen, aufzustehen und zu zahlen, größer wird, man nur noch gedankenverloren an seinem Bier herumsitzt und mit dem Bierdeckel herumspielt. Der Lokalbesuch wird so zur Qual. Ich vermeide daher allzu volle, große Bierlokale. Schanigärten und Gastgärten sind hingegen erträglicher, nicht zuletzt wegen der verminderten Rauchbelastung.

Entbehrlich erscheint hingegen die tägliche Reizüberflutung in den Öffis, auf den Straßen, an den Haltestellen. Überall wird telefoniert, überall hört man diesen nervige Melodie als Signalton, wenn eine neue Whatsapp- oder Facebooknachricht eingetrudelt ist. Eine Zugfahrt lang hatte ich das mehrfach in der Stunde – im Bordrestaurant, wohin ich mich regelmäßig zurückziehe, weil dort meist weniger telefoniert wird. Wer isst, kann nicht telefonieren. Immer häufiger ist man von Menschen umgeben, die ihre Umgebung überhaupt nicht mehr wahrnehmen, vertieft sind in ihr Smartphone und vor allem telefonieren, telefonieren, telefonieren. Zu jeder Tageszeit. Die rücksichtlos aus ihrem Privatleben erzählen, das mich gar nicht interessiert. Wie Studien erwiesen haben, hört das Ohr aber trotzdem mit, weil es versucht, das Gespräch zu ergänzen, den anderen Gesprächsteilnehmer zu ersetzen. Phantomschmerzen der anderen Art. Die Reizüberflutung verstärkt sich bei mehreren Gesprächen gleichzeitig; dann bimmelt hinter einem das Handy in einer weiteren Tasche, aber die Dame braucht gefühlte Minuten, bis sie merkt, dass es ihr Handy ist, was da klingelt, obwohl es einen unverwechselbaren, nervigen Klingelton hat, den sonst niemand in diesem Abteil hat; dann wird das Handy hervorgekramt, weitere gefühlte Minuten geschaut, wer denn überhaupt anruft und ob sie abheben soll. Dutzendfach erlebt man das am Tag in den Öffis, dazu die Enge, das Aufeinanderstehen, das Schubsen, der zwanghafte Griff in die Jackentaschen, ob alles noch da ist, dass man nicht noch befladert wird, jetzt, wo man so eng zusammensteht, dass man sich kaum rühren kann. Flegelhaft stehen die Fahrgäste oft auch bei den Türen, gewaltsam muss man sich durchquetschen, weil der Herr gerade wieder in sein Smartphone schaut statt die Menschen zu bemerken, die aussteigen wollen. Draußen boxt man dann auch unfreiwillig den ein oder anderen zu Seite, wieder Geschubse, und an den Rolltreppen der ständige Kampf von den überhasteten Nachzüglern, die zu den piepsenden U-Bahn-Türen rennen, und nicht durchkommen durch die Menschentraube, die sich zu der Treppe hinbewegt, wie eine undurchlässige Mauer, die niemanden durchlässt. Olfaktorische Übelkeiten gesellen sich hinzu, in Gestalt von Erbrochenem, weggeworfenem Kebap, nach Öl und Geschmacksverstärker stinkenden Nudeln, Schweißgeruch, Energy drinks, das ganze Programm eben.

Ich frage mich, wie ich das früher ausgehalten habe. Dabei liegt die Antwort auf der Hand. Früher war es nicht so schlimm. Früher gab es keine Smartphones, keinen Hang zur ständigen Ablenkung durch die Technik. Das ist so sicherlich falsch, denn auch damals gab es Gameboys und tragbare Kassettenrekorder. Dennoch herrschte Ruhe. Ich erinnere mich daran, wie ich die ersten Jahre meines Studiums über weite Strecken innerhalb Deutschlands und später zwischen Österreich und Deutschland pendelte, auch innerhalb Österreichs. Ruhige 6er-Abteile, und das Beste war: Es ergaben sich spontane Gespräche. Einmal unterhielt ich mich fast fünf Stunden mit einer Wiener Medizinstudentin auf der Fahrt von Innsbruck nach Wien. Heute traut man sich nicht mehr, jemanden anzusprechen, geschweige denn dabei zu unterbrechen, wenn der Ipod läuft, oder der Facebookchat im Dauerbelagerungszustand ist. Spontane Bekanntschaften ergeben sich seltener, spontane Blickkontakte, auf sich aufmerksam werden. Dass diese Art und Weise, jemanden kennenzulernen, ein paar Jahrzehnte früher offenbar noch Usus war, zeigt der Erstling von Sten Nadolny, Netzkarte, dessen Protagonist bei seinen Fahrten quer durch Deutschland so allerhand Bekannschaft machte, wenn auch mit ungewohnt direkten Anreden wie „Sie sind sehr schön. Ich möchte gerne mit ihnen sprechen.“ Früher genoss ich auch die Fahrt, das stundenlange Unkommunikative-aus-dem-Fenster-starren, ohne dabei akustisch unterbrochen zu werden. Das ist heute alles nicht mehr möglich. Einen Einzelplatz reservieren undenkbar, denn vor, hinter, neben mir könnte eine Quasselstrippe sitzen, oder ein Mann, der unbedingt seine Businesstelefonate in der zweiten Klasse erledigen muss. Oder ein zu laut eingestellter Ipod. Widerspruch nicht einzulegen ist auch en vogue. Wer traut sich zu widersprechen? Die wenigsten. Ich mich ohnehin nicht.

Ist man erstmal in diesem Reizüberflutungsteufelskreislauf gefangen, werden auch Geräusche, die sonst tolerierbar wären, ins Unerträgliche erhöht: Motorsägen, und wenn es nur fünf Minuten sind, Nachbar’s sonntägliche Staubsaugtiraden samt Möbelverrückenaktion, die Müllabfuhr, Menschen, die sich laut auf der Straße unterhalten, Kindergeschrei, der Harleydavidsonfahrer, der jeden Abend zur späten Stunde mit lautem Brumm in die Garage fährt, Motorradfahrer, die sich Rennen um die Wohnblocks liefern, Autofahrer, die kreischend starten und bremsen, mitten in der Nacht hupen, bellende Hunde, die nicht aufhören können.

Reizüberflutung bis hin zum Overload ist nur ein Teil der Einflüsse des Umfelds, die etwas verstärken, was sonst aushaltbar wäre. Das lange Zeit sogar aushaltbar war, aber der Unmut zur Langeweile, das nicht Ertragen können von Stille, das Beiseiteschieben von Tagträumen, die die Kreativität sonst Purzelbäume schlagen ließen, haben zugenommen. Nicht ich habe mich verändert, sondern der Sein-Zustand. Ich bin darin nur älter geworden.