Algorithm of the Steps Taken by Parents

The parents notice that their child’s mental development has stopped and that he/she begins to lose things he/she had acquired.

That is, he/she stops doing what he/she used to do until then, stops smiling, playing with toys, starts to answer less and less often when he/she is called by his/her name, stops wanting his/her parents’ presence, only plays with objects, stops saying the words he/she used to say and stops babbling and then cooing.

The parents notice in the park that their child’s behaviour is different from that of children his/her age and that their child’s level of knowledge is much reduced compared to children his/her age.

What can parents do in this situation? They can say ‘our child is fine, we’ll wait for him/her to grow out of it’ or they can see their general practitioner, a paediatrician or child psychiatrist for a diagnosis.

What happens if they deny the existence of a problem and don’t see a doctor? As time passes, the symptoms become more and more obvious and the gap between the biological age (how old the child is) and the level of knowledge (what he/she understands and knows to do) increases. Eventually the parents will still go to a psychiatrist for a diagnosis. Some parents wait for the child to ‘grow out of it’ until school starts, because the child cannot understand school requirements and cannot respect the school rules (during classes and breaks) and cannot communicate and play with his/her classmates. At this stage the parents can no longer deny the autistic spectrum disorder diagnosis.

As a consequence, the length of the treatment, its complexity and costs will be much higher if the condition is diagnosed later and the start of the symptoms was years before.

If the parents see a doctor and get the autism/autistic disorder diagnosis, they have two options: to accept the diagnosis or not.

By not accepting the diagnosis they will choose to wait and over time the symptoms will become more and more obvious and they will wait until the child reaches schooling age. They will then ask for help and will expect a few months of drug/therapy treatment to recover everything they didn’t do during the 5-6 years since they noticed the first symptoms (this is obviously not possible). The onset of depression in the case of one parent is very probable, which will make the start and the efficiency of the treatment and therapy even more difficult.

During the stage of accepting the diagnosis the parents can ask for other opinions and see a second or a third doctor (in more developed countries access to a second opinion, a second specialist is very difficult). Some parents keep seeing specialists until they get to one that will tell them what they want to hear, that the child is fine and that they should wait. Again, we get to the situations above, where the parents decide to wait and the symptoms become more and more obvious.
If the parents accept the diagnosis, then they should make a plan of action.

They have two possibilities.

To follow the advice of the specialists or to follow the advice of other parents that have a child with ASD.
Some parents decide to follow the advice of other, more ‘experienced’ parents. Some advice can be good, some bad.
Why? Because a parent speaks about what he/she understood about autism (not what autism is), about what he/she understands about the drug treatment (not what the role of the drug treatment actually is), speaks about what he/she understands about therapy (not what therapy actually is and how the therapy is correctly conducted).

Some parents have understood, some haven’t.
If you want to find out the opinions and advice of other parents meet with them and the children in the park or on playgrounds. Watch the child of the parents that give you advice and see how he/she gets by in the real world, among children. Think if you want your child to be the same as that child. If you like it, follow their advice.

There are parents with good intentions, but their child is making small progress years after getting diagnosed. Be careful with their advice because sometimes it can be a barrier in the way of your child’s recovery.

Be careful: in the case of this disorder there is NO such thing as 2 identical children!

Another option for the parents is to follow the advice of the specialists and to start the drug treatment, counselling, ABA therapy combined with speech therapy, occupational therapy, kinesiotherapy, art therapy, PECS, according to the child’s needs and the specialists they have access to.

How does a parent know if he/she has met a team of specialists or not? They have to talk to the parents of a child with autism that followed a treatment/therapy with that team. They also have to see the treated child in order to form an opinion about the results of the therapy and about the team.

When do the drug treatment and therapy have to stop? When children the same age as the treated child consider him/her their equal in terms of level of knowledge and level of behaviour.

If after a period of therapy the child stagnates and stops making progress, or, even worse, reacts badly when seeing member s of the team, what must be done? This means that the team have reached their maximum potential and/or that because of the lack of professionalism they have started to make the child frustrated and no longer have the necessary knowledge and experience to continue with that child.

What must be done? Look for another therapy team with a level of knowledge and professional experience capable of continuing the therapy. If you have 4-5 months of therapy and the child stagnates or makes no improvement, it is recommended to try and see what isn’t working in the team and, if need be, switch to another team.

After a period of drug treatment/therapy the child is making great progress and the gap between his/her knowledge and behaviour and other children his/her age is greatly reduced. Some members of the family say that the child is fine and that there is no need for more therapy or drug treatment.

The parents can listen to them and stop the treatment/therapy. What happens? If they stop the treatment/therapy too quickly, after a while they will notice that the child is no longer making progress at the same speed as he/she used to during the treatment/therapy and even that some of the old symptoms come back and that he/she has started to lose the latest acquisitions. What must they do? Restart the treatment and the therapy.

Who will give the final verdict that the child is fine? The specialists can run tests, they can watch the child in various situations and can give a favourable verdict.

But the final verdict is given by neurotypical children the same age as the treated. When neurotypical children consider him/her their equal, which is when the child treated for autism understands when a child his/her age is serious or joking, when he has appropriate behaviour, when he/she is empathic, when he/she blushes and is ashamed appropriately.

The drug treatment and therapy end when the child treated for autism is seen as an equal by children his/her age. A parent that sets this goal will find ways to reach it.

Download the Parents’ Algorithm