Being excluded is one of the worst feelings – about a child with ADHD and Asperger’s

ADHD is a very popular topic for questions in our community. So we are thankful for this very informative blog post, written by Jessica who has a son with ADHD.

Our son is eight years old and is affectionate, empathetic, generous, curious and and has a pronounced sense of justice. He always surprises us, especially with his eloquence. He is helpful and does everything in his power to please others.

He has ADHD and Asperger’s

We are both in our early 30’s, enjoying life. My husband is working in the IT sector and I am a caregiver. We live in a family house in the countryside. We are raising our sons with love and a certain structure. We love parenting.

It all started at the age of four: Our son experienced social exclusion at day care. He hit and pushed other children, reacted aggressively. Why? The nursing staff had a clear opinion: Too much sugar, not enough physical activity and parental lack of control and authority. Yes, they were sure of that.

Our son always struggled with gross motor skills, he always seemed a little different.

We still went to ask for help at the child guidance office. When we arrived at the appointment with our son and the counselor tried to talk to him, my son had a meltdown, started to throw his toys around and was screaming. I was sent home after 90 min., apparently there was nothing wrong with my parenting.

Psychotherapy was recommended…

We tried that, for a year. Many parents-therapist consultations were involved and no positive change. So we decided to quit.

Again the day care called and told us the behavior of our son was unbearable, by then he was 5 years old. Apparently he was endangering himself and others, he couldn’t concentrate and got frustrated really quickly. They told us to see a parenting counselor again.

Our objection that we already tried that was acknowledged with a raised eyebrow.
When the social exclusion got worse and the staff at the day care started rolling their eyes once we stepped into the building, we decided: “It’s time to leave”. I couldn’t bear it any more. We managed to find another day care center in a nearby town. I cried tears of gratitude, I was so relieved.

The turning point

After my son spent four weeks at this new kindergarden, it was time for a feedback meeting with the staff. They told us our son was kind, friendly and helpful. But his drawing skills demonstrated a developmental delay, he avoided the contact with other children and reacted aggressively when he was confronted with his misbehavior.

The caretaker encouraged us to try occupational therapy and thought it would be a good idea for him to engage in martial arts. So he could let off steam. Our pediatrician referred us to the social educational care center.

After a waiting period of 4 months, by then he was 6 years old, my son was diagnosed with ADHD.

I cried, my world collapsed. They suggested seeking professional help with a psychologist to start behavioral therapy.

Prejudices

So, my research began. For weeks I was reading everything I could find on the Internet, bought books. And I decided we would try multi-modal therapy.

Drugs plus occupational therapy plus psycho-motoric development

Short version what people in our environment had to say:

“Do you really want to treat your son with Ritalin?”
“Just don’t give him any sugar!”
“He just needs a firm hand and discipline.”
“ADHD didn’t exist until recent years.”
“This is all down to media consumption.”

I can’t blame anyone, who never had to deal with that issue before. After all, until recently I used to think the same thing.

But I want to raise awareness. Every single story is important.

It’s not my son’s behavior that is overwhelming us. There are therapies available. The worst feeling is having to face the social exclusion. The glances when people were expecting a friendly welcome and our son was just standing there, stony-faced. The whispering of the neighbors when he misinterpreted an accidental push for an assault and started screaming that someone had hurt him. The ignorance, the prejudgment as something seems to be abnormal and it seems obvious to anyone, who is to blame…

Explanation: What is ADHD?

ADHD is caused by an underlying neurobiological metabolic and functional disorder in the brain and is highly hereditable.

With ADHD, there is an imbalance of the neurotransmitters dopamine and noradrenalin.

Psychosocial causes can increase the symptoms. Symptoms of ADHD are: concentration difficulties (heightened alertness to environmental stimuli), aggression, and impulsivity. The children lack confidence; they are not able to use their full potential. ADHD is not cultural based and independent from social status and gender. You don‘t grow out of the condition.

Diagnosis

When a child shows signs of ADHD, he or she needs to be evaluated by a trained professional. The diagnosis can be made by a mental health professional, like a child psychiatrist or the social educational care center (Germany). The waiting lists are long: 4 – 5 months are not uncommon. I would recommend anyone to be placed on a waiting list.

Whom not to consult for a diagnosis
Yes, this is very important to me. A pediatrician, even if he says so, is not the appropriate person to contact for this diagnosis. School psychologists, social workers, the youth welfare office and psychologists are also not trained experts.

Therapy / Treatment

As ADHD is a neurobiological disorder, the logical treatment: Medication treating the imbalance of the neurotransmitters / chemicals in the brain.

There are 4 different substances available (Germany):

Methylphenidate (Ritalin, Medikinet)

Lisdexamfetamine (Elvanse)
Guanfacine (Intuniv)
Atomoxetine hydrochloride (Strattera)

The first two only have a brief plasma half life, are quickly absorbed. The dose is not based on body weight; it is based on how quickly each person metabolizes the medication.

Within the scope of treatment combining different modules are also important (multi-modal-treatment):
Equine therapy. Occupational therapy, Logo therapy, behavioral therapy, family therapy, psychomotoric therapy – multimodal treatment concept. I don‘t know about any other metabolic disease you have to justify yourself as a parent, to receive adequate medical care.

Length of treatment

Since ADHD is a chronic disease, lifelong therapy may be necessary. There are people with ADHD who, over the years, develop strategies for their deficits and no longer need drugs. To achieve that, medication alone is not sufficient; multi-modal-treatment is the key.

Other elements / possibilities for support

Depending on the severity of the disease, a claim for carer’s allowance can be made. Yes, it‘s possible! Just send your application directly to your national care insurance company, sometimes an online application is possible, or you can download the relevant documents. Your application will be send to the medical service of health team and they will schedule an appointment for assessment.
An application for a disability pass might also be an option for you.

At the age of 8 my son was being treated at a day care-hospital and diagnosed with Asperger’s.

We now spend our lives with a few, but good friends.

We are being supported by a family counselor. The care level allows my son to benefit from various therapies and provides us with a few hours of rest. The prejudices haven‘t changed, but we have learned to live with that. We know exactly what we are achieving every single day and only that matters.

As you can see, support is available, even for us, who were socially excluded, treated like outsiders and not taken seriously. We just have to see our possibilities, know our options and use them. After experiencing a four year doctor marathon, exclusion, temper tantrums and condemnation, I can only advise parents who recognize their child in this blog post:

Listen to your gut feeling and your child!

If you suspect that your child has ADHD, talk to your doctor about getting an evaluation and ask for support. You and your child are entitled to help.

Best regards,
Jessica – a mother who wishes everyone would know more about ADHD

PS by Béa: I thank you with all my heart for writing this interesting, exciting and profound article. It‘s such an important issue!

Please be so kind to share! Help raise awareness of this chronical disease.
Thank you!